Dr. Maureen Petersen on Finding Peace in Parenting a Child with Chronic Illness

Debbie:

Hey, Maureen, welcome to the podcast.

Dr. Maureen Petersen:

Oh, thank you for having me on your show. I truly appreciate you allowing me the time to chat with you and share some wisdom with your audience. Thank you.

Debbie:

Yeah, well thank you for reaching out to me about your work and your book. This has been a season where I’m bringing new conversations to the show, which is very exciting to me and hopefully is bringing more just new insights to my listeners. So this is going to be a good conversation. But before we get into the meat of it and talk about your book, I would love it if you could just tell us a little bit about who you are. Kind of give us your not your elevator speech, but you know, when people say, who are you, what are you all about? If you could share that with us.

Dr. Maureen Petersen:

Yeah. Yeah, so I will kind of share with you the somewhat abbreviated version of my life story and kind of how I got here. So when I was a kid, my two big dreams were being a doctor and being a mom. I was very fortunate and got to achieve both of those dreams. During my pediatric residency, my daughter, who was my second born child, was an infant at the time and was diagnosed with pediatric neuroblastoma, which is a type of pediatric cancer. At that time, it felt like the carpet was pulled out from under me. I went into a very dark place, kind of being led by fear and overwhelm and guilt and all the emotions. She went through surgery, chemo, the whole works and with time and with the support of friends, things got better for me personally. She did very well through the therapy. Then fast forward when she was 12,

She texted me from school one day and said, I’m peeing a lot at school. You need to bring home whatever you need to bring home to fix me. So I in my mind think she must have a urinary tract infection because we’ve already been through this bad thing. And I get from the pediatrics clinic, a urine collection cup and a urine dipstick and bring it to her school because I didn’t want to go all the way home to figure out she had a UTI. I get to her school, she pees in the cup in a school bathroom and I go in afterwards, dip her urine in this tiny school bathroom and realize immediately she has lots of sugar in her urine, which there’s only one diagnosis and that’s type one diabetes. And in that moment, all of the emotions from the previous time of all of her cancer journey kind of came rushing back. And I knew that I needed to take proactive steps so that I wouldn’t wind up in such a dark place that I had been earlier. And through that journey of learning how to manage life as a professional and as a mom to a kid with a chronic illness, it has led me to be very passionate about helping other families who have gone on a similar journey in their family life.

Debbie:

Yeah, your story is so compelling and you share this throughout the book and it is very personal. I love the way you structured the book and actually I should say the name before my brain kind of takes me in all different directions. So listeners, Maureen wrote a book about her experience for parents. It’s called Reclaiming Life, a Guide for Parents of Chronically Ill Children. And it is, you know, when Maureen first reached out to me, when when you first reached out to me, I was intrigued because I know that a lot of parents in our community of, you know, raising neurodivergent kids have also are dealing with chronic illness, whether that’s severe food allergies or whatever that looks like for them. And so I was super interested to read your book. And then also there’s so much of your personal journey that is relatable, even if the specific topic of chronic illness is impacting you. So as a way to kind of get started, could we even kind of define what chronic illness is? Listeners may not know kind of what that encompasses.

Dr. Maureen Petersen:

Yeah, so just in terms of a kind of medical definition, the word chronic means lasting longer than six weeks. To me, a chronic illness is anything that is on the top of your mind frequently, and for parents, on the top of their kind of worry list. So it can be something like asthma or food allergies or cancer or diabetes and anywhere kind of in between. But any time that a child has health challenges, I know we as parents focus on making sure that we do everything to keep from losing ourselves can really be quite detrimental to parenting.

Debbie:

Yeah, yeah. And you mentioned the word overwhelm earlier. And as you were talking right now, that’s kind of what I feel the sense of too many pieces, too much to do, I have to do all the things and the stakes are so high. One of the things that you wrote about when your daughter was younger, you said, I lived in a constant storm filled with clouds, storm clouds, filled with storm clouds, filled with overwhelm. This emotion rained down on me every day. And I had an umbrella to protect me from the downpour. The feeling increased my fatigue and caused me to further ignore taking care of anyone except Kylie. I had often heard, fake it till you make it, but no matter how many times I said I’m fine, it wasn’t changing the reality that I wasn’t okay. So I think that quote jumped out at me. I think it is very relatable and I’m just wondering how do you help parents or how do you guide parents in managing the overwhelm. I just imagine it’s pervasive.

Dr. Maureen Petersen:

Yeah, so, you know, the very first thing is labeling that you’re overwhelmed and admitting to the fact that you’re overwhelmed. That, you know, and I talk about this in the book that I felt like if I asked for help from someone, it was like I was failing as a mom. And I had this deep, deep rooted dream of being this awesome mom that failing at that mission was incomprehensible to me. So in my mind, I thought, well, if I ask for help, I’m failing. Well, the truth in the matter is that we all, as we go through life, whether our kids have health challenges or not, are always going that we are overwhelmed can help with really processing that emotion and be able to know that it’s okay to be overwhelmed. What parent isn’t gonna be overwhelmed when their kid just gets diagnosed with cancer or diabetes? And that’s normal. It’s just that our brain freaks out. And when we realize, hey, nothing’s wrong here. it’s okay, then we can start figuring out how to manage the things on our plate. And that management may include delegating things to other individuals, but it really is prioritizing what’s on our plate so that we don’t feel guilty when something doesn’t get done in a day.

Debbie:

Is it possible, we were just having a conversation in my parenting community last night about guilt and how so many of us feel it. If I would have done this, you know, the shoulds, if I could do this over, I made the wrong decisions. Can you talk about that maybe in your own life, how that showed up for you?

Dr. Maureen Petersen:

Oh yeah, that, I mean, again, it goes back to understanding that guilt from all of these, you know, should, would, could kind of thoughts that go in our brain is normal, but it also is something that we don’t need to continue to think or feel. And, you know, a good analogy is that if somebody touches a hot stove, we want them to feel pain so that they pull their hand away. And so that feeling of pain is actually a good thing because it’s giving them kind of a warning sign that, hey, that stove is hot. What we don’t wanna do is have them keep their hand on the stove. So that is related to what we were saying about guilt, that guilt, that emotion and dwelling in that emotion of guilt is kind of like keeping our hand on the stove. It does not serve us at all. It’s not helping us move forward. It is realizing, okay, it’s there because maybe I want to do something differently in the future, but letting it go needs to happen so that you can take the next step in the future. And certainly, you know, we are all humans. And being a human means you’re not perfect. And even I, as a physician, when it comes to advocating, you know, have goofed up at times and have thought to myself like, I should have done this when I was in that doctor’s office with my daughter or I wish that I had asked them about this, or I could have been a little firmer in what I wanted. But it’s the realization that your mind is obsessing about it, and if you can stop allowing it to obsess and just be curious and learn, and then realize you can do it differently next time and move on. And that is the way we keep taking a step forward and growing.

Debbie:

Yeah, I love that analogy. And that’s just such a good visual to think about next time, you know, we’re kind of beating ourselves up thinking, why am I keeping my hand on the stove? Like, I love that. It makes total sense. And it’s also an invitation to really lean into self-compassion in those moments. So get your hand up the stove and take, do what you need to do in that moment to be kind and gentle to yourself.

Dr. Maureen Petersen:

Yeah. And, and you know, another trick is, um, something I really firmly believe is that every challenge in life, we have two choices when we’re facing them. One is we can sit in the corner and pretend like it’s not happening and allow life to happen to us. Or we can make the decision that, you know what, like this challenge can be turned into a gift and I’m gonna have life happen for me. And so in those moments of guilt on whatever somebody, whatever thoughts are creating that emotion, if you ask yourself and you pause in the moment and say, what can, how can I make this challenge or this, what I did, um, uh, what I should have done or what I could have done. How can I turn it into a gift and what can I learn from it? And by giving your brain a job to do that’s helpful allows us to get out of this overwhelming guilt where we’re obsessing about an emotion and keeping our hand on the stove.

Debbie:

Yeah, I want to speak to that a little bit more. This idea of turning it into a gift and we’ll do that right after a quick break but I’m going to follow the threads of what you’re sharing. It’s really great. Okay. So you were just talking about the power actually of giving our brain a job of thinking about this as where can we grow from this, what can we learn? And I like that reframe too because I think we can simplify it. Like this isn’t happening to me, it’s happening for me, but that can seem really trite and not real at the moment. So knowing that actually this is important because it’s giving our job something to do. And you also, you have a chapter in the book where you talk about maintaining perspective and how important that is and how critical it is that we don’t kind of stay in this why me mode, this victim mode. And I’m thinking that’s got to be so critical for how our kids experience their chronic illness and what’s happening with them. Could you talk about that?

Dr. Maureen Petersen:

Yeah, absolutely. And I’ve had a lot of parents say that they want to protect their child from the worry and fear and all the emotions that go into having any sort of health challenge. And one of the things that I work with them on is really understanding a parent’s ability to be vulnerable is a really good teaching moment because that vulnerability allows the child to learn by watching and the child learns, you know what, it’s normal to have feelings of stress or fear or overwhelm or any of it. But shielding them from seeing and labeling and processing those emotions can be quite detrimental to our kids because they’re thinking that, hey, challenges can come at me and I can be very stoic like mom was previously or dad was previously. And that’s just not how life happens, that life happens with good things and bad things. And so using that opportunity to teach a kid how to deal with things in the bad moments is such a valuable life lesson.

Debbie:

Yeah. Just a little bit more on that piece. If parents are listening to this and they have kids who are dealing with chronic illness, whatever that looks like for them, or just parents who are listening who have neurodivergent kids wondering why am I dealing with this? Why me? Why am I dyslexic? Why do I have to be dealing with all the things that come with being this complex human? How would you guide people other than kind of modeling your own vulnerability through that process? Any other thoughts on how parents can best help their kids? Not like they don’t have to love it and embrace it, but have some sort of relationship with who they are in that way.

Dr. Maureen Petersen:

Yeah, and the biggest advice that I can say is having open communication and allowing a child to express their thoughts and feelings in a way that they’re developmentally able to. Because allowing the opportunity for them to share and sometimes what they share may sound really wonky to us as wiser adults, such as my older kiddo, at one point in time said to me and explained to me about feeling jealous over his sister’s diabetes and to an adult being jealous over somebody’s chronic illness sounds really weird. Like, why would you want a chronic illness? Like, that’s crazy. But to a kid, it means that a chronic illness is shifting the parent’s attention to that child. And so they’re verbalizing their emotions in a way that like I said, is developmentally appropriate for their stage in life. So allowing them to have that opportunity to express what they’re thinking and do it in a way that isn’t going to shame them is super important.

Debbie:

Yeah, yeah, that’s so helpful. And it makes me think about the sibling dynamic. And so I know you have two kids and, and I, you know, I imagine and understand that dealing with a serious chronic illness is going to impact the whole family. And I imagine there might be jealousy from the sibling who’s not dealing with that. Like, how did you navigate that? And how can families kind of really make sure everyone’s needs are being met and that the family doesn’t really pay a huge price for what’s happening.

Dr. Maureen Petersen:

Yeah, and for sure, a big diagnosis for one member of the family is gonna impact the entire dynamic. But again, as parents, we can look at it as an opportunity for, or a gift, like we were talking about before, to be able to teach the siblings about that diagnosis to be able to teach them about advocating for somebody who is different than them, and to also include them in whatever the issue is, and that inclusion can give them a purpose. And we all know that if you have a sense of purpose and meaning in life, like you will be kind of spiritually happier. So doing that for a sibling where we can give them a job, whether it’s in terms of type one diabetes, having them be there with the glucose monitor and strips to be ready to do the finger prick with their sibling, gives them a purpose and that can be very helpful. But also again, allowing them the time to have mommy, daddy, date night with the sibling, to allow them the opportunity to share their thoughts and feelings on what’s going on and just have the only attention beyond them can also be very helpful.

Debbie:

Yeah, I would think that would be so important and just validating, right, all the all the feels. Yeah.

Dr. Maureen Petersen:

Oh yeah, yeah. And you know, I mean, that’s such a great time to celebrate the sibling and to celebrate, you know, them stepping up to help out with whatever challenges going on with the family and to celebrate whatever accomplishments they have made in their young child’s life. It can be very powerful for sure.

Debbie:

Yeah, so I want to pivot and talk a little bit about another huge emotion that I know is part of the experience for any parent navigating this journey and that is fear. And we’ll do that right after a quick break. Okay, so in your book you share a story, I was kind of gripped at what’s happening now. You shared a story about when your daughter was I think in her early 20s, she was living on her own in medical school and had a scary night because you couldn’t reach her. I’m wondering if you would be willing to share that story with our listeners?

Dr. Maureen Petersen:

Yeah, sure. It happened, I think, three years ago. And she, at that time, had been diabetic for nine-ish years. And we had always had this kind of dance where she wears a continuous glucose monitor that feeds to an app to my phone. So I can see if her blood sugar is high or her blood sugar is low. And, um, I, anytime I got alerted, our dance would be, I’d give it a minute or two. And she would text me saying, you know, I’ve got it. If I didn’t hear anything from her, I would text her and say, you know, is her prompt to text me back right away. Well, this one particular night was super scary because I got alerted that her blood sugar was low. I gave it a minute, nothing. I did my usual fixing question mark, nothing, and did it again, nothing, called her, nothing, FaceTimed her, nothing her boyfriend, who’s now her husband, lived in another state at the time. And I texted him and said, do you know how to get ahold of her? And he said, I have the next door neighbor’s phone number. He tried to get ahold of the next door neighbor, while I tried to continue to get ahold of my daughter. It was truly frightening. And I ended up calling the police who went to her door. She was fine, but her phone was off. And thank goodness I called because I’m not sure if I ignored it kind of what would have happened. 

So the story had a happy ending, but oh yeah fear. That was an emotion of the night. When the police officers came to the house and woke her up, they had her come outside and drink some orange juice that they had. She, looking all disheveled with her bed head, they say to her, like, oh, you poor girl. She sees how many times I have called her on her phone. And she looks at her phone and then looks at them and says, oh no, my poor mother. And then, you know, it was at that time that I kind of realized that fear is always a part of a parent’s life. Whether you have a kid with a chronic illness or not. It’s part of your life because you want your kid to be safe and healthy. And in those moments of life when we can’t get ahold of our kid or maybe they’re late for a curfew and we can’t track them down, that fear is there. And it’s through the realization that our lives don’t need to be led by fear. Fear is gonna pop up, just like what we were talking about earlier with, it’s gonna be a hand on the stove moment, but the next night after that, I don’t need to go through all of the kind of emotional trauma that I had gone through the night before. That it’s there, but I’m not letting it lead me. So, you know, one of the things that I often tell parents is, in life, all of these emotions come up, but don’t let them be in the driver’s seat of your car in your journey in life. Like take those emotions like fear and put them in the trunk of the car and have them go along for the ride, but don’t have them grab onto the steering wheel. That’s your job.

Debbie:

Yeah. And so is that really the key then? I mean, because I, in reading that story, it’s like, it does seem like fear. And for all parents, yes, it’s just, it’s, and when you’re in that moment, right, it feels intolerable. Like, this is, you know, we go to that all or nothing thinking that you talk about, like, this isn’t, I can’t do this, right? And so is it, you know, just finding a way to in those moments, remind yourself that this is an emotion that I’m feeling as opposed to the truth.

Dr. Maureen Petersen:

Yeah, yep, yes, yeah. And it’s telling yourself, this is temporary, that it’s not gonna last forever. I need to be here in the moment and have this emotion, but I have a choice of how long it’s going to last. And all of these things that we’re talking about, like how to manage overwhelm and guilt and fear. It takes practice on doing these things that I don’t want anybody to think, oh my goodness, like I, you know, just snap and snap my fingers and boom, I come out of fear or guilt or overwhelm. It is daily practice to remind yourself that you have control over your brain and have control over your thoughts. And those thoughts really are the thing that are generating your emotions. And when going back to the story of what happened with my daughter and the low blood sugar, don’t think that. I didn’t do anything to learn from it and set up a safeguard for next time. We did. I have her neighbor’s cell phone programmed in my contact, and we set up a landline in her house. You learn from it and grow. Don’t just sit there being fearful 24-7 because there’s no good that comes out of that.

Debbie:

Yeah, yeah. Thank you for that. I wanna talk about, and I’m just being cognizant of the time, but I do, sorry, let me start that over. Related to what you just shared, I’d like to talk about this idea of a handoff of care. I don’t know if that’s the right language. We talk a lot in this community about scaffolding skills for our kids so that we’re kind of helping our kids gain the skills so they can have more agency over their lives and what’s happening. And I imagine with the stakes so high when you have a child who has chronic illness and it could be a life or death situation, there must be an immense sense of responsibility for making sure your child grows into an adult who can tend to their own medical needs. I’m wondering if you could talk a little bit like navigating that handoff or that progression looks like for parents.

Dr. Maureen Petersen:

Yeah, and so, you know, it kind of goes back to what I was just saying about practicing that a handoff like that is not gonna happen from one day to the next. That boom, you’re gonna have a kid who has never taken care of their illness to the next day they’re gonna manage everything. That it is really giving them a little bit of leeway appropriate for their developmental age and allowing for some mistakes to happen because like we’ve been saying, you know, nobody’s perfect and that means our kids aren’t perfect either. They need to make mistakes and we need to allow them to grow and learn from them. But not giving them the opportunity to make really not allowing our child to have that kind of handoff and to be able to really manage themselves. You know, the other thing that is super important in that kind of handoff process is having the child watch us advocate for the in their health journey. Again, shielding them from these moments of advocacy that we do for our kids robs them of this opportunity to learn how to advocate for themselves. And so them watching us and learning from what we do well and what we could have done better, allows them to grow in their knowledge so that handoff becomes a little more seamless over time. But again, it’s not going to be one day to the next. It is kind of a more gradual growth that allows for successes and failures.

Debbie:

That’s great. Thank you. I have one more question before we wrap up, because as you were talking, you mentioned advocating and that’s something you talk about, you know, and you mentioned at the beginning of this conversation that you felt you didn’t advocate, you know, strongly enough and you’re a pediatrician and you had that struggle. And so this is also something I hear from so many parents that we feel ill-equipped or we don’t have a voice or, you know, we don’t know how to kind of best push for what we believe and know deeply our child needs in a situation. So you have in your book three rules for effectively disagreeing, which I loved. They will be fascinated, stay engaged, and be aware of how you feel. And I’m wondering if you could just talk about those for a few minutes.

Dr. Maureen Petersen:

Yeah, when we think about advocating, oftentimes our mind goes to this place that we’re going to have to have a battle with our health care provider or have a battle with our school system. And that kind of thought will lead us to this kind of anxious emotion. So we are coming into that kind of advocacy meeting with guns blazing already. So taking a different approach and having that approach be in a place of curiosity allows the emotion to be in a much calmer space. And, you know, I even teach parents about before any sort of advocacy appointment or meeting to jot down what their questions or thoughts are that they want to make sure are addressed at that appointment. And that list functions for two different things. One, it makes sure that in the moment, you don’t forget anything so that you have a checklist knowing everything you want to address. But the other piece of it is it allows you to go back to that list when you can feel emotions getting a little tense because you can objectively look at the list and go on to kind of the next thing or next topic. But the curiosity piece allows a conversation to get to kind of a mutual understanding. I firmly believe that nobody is 100% wrong. So that belief helps me because in the moments where I initially think they’re wrong, they’re dead wrong, that it tells my brain no we’re gonna look for the 10% right in what they’re saying. And so we’re gonna keep asking questions to try to figure out where that golden nugget of information is and what they’re saying. And again, it goes back to giving your brain a job, allows it to focus on something that is productive, that allows you to leave that appointment with this huge amount of trust because you’re being curious and inquisitive and in a very calm, respectful way.

Debbie:

That’s great. That’s great advice. It’s something, the advocacy piece is something that is just so hard for so many families and so many parents. If they’re not naturally, you know, if they’re conflict diverse, so they just are very uncomfortable with that.

Dr. Maureen Petersen:

Well, and you know, one of the things that I have found is that parents go into it thinking that doctors or school professionals are on this huge pedestal and that going into it like I’ll never be on that pedestal with them. And that is a dangerous belief because it is not allowing that health provider or school provider to make a mistake or be wrong or be human. That, you know, doctors have bad days too. Um, they’re not perfect and making sure that, uh, they’re not on this kind of invisible pedestal really helps that conversation too, that the Healthcare provider may know a lot about medicine and the diagnosis that the patient has, but they’re still human. And forgetting that is just dangerous.

Debbie:

Yeah, that’s great advice. Thank you. I do want to wrap up this conversation, but first of all, I just want to say that I so appreciate what you shared, the way that you share your experience in this book. It is really powerful, and you also include examples of how you experience this as a physician, which is so helpful to get that other lens. And so listeners, the book is called Reclaiming Life, a Guide for Parents of Chronically Ill Children. And Maureen, is there a place where listeners can go to if they want to learn more about you and the book?

Dr. Maureen Petersen:

Yeah, absolutely. I have a website, MaureenMichelleMD.com. Michelle is with 1L. And the book is on there. There’s more about me on there. The book is also on Amazon.

Debbie:

Thank you and listeners. I will have links as always in the show notes to Maureen’s website and book and anything else that came up in our conversation. I’ll pop it on there. So thank you again. Thank you so much for the conversation. I’m so glad you reached out to me and I just really enjoyed getting into all this with you today

Dr. Maureen Petersen:

No, I loved this conversation. And like I said at the beginning, really truly appreciate you and the work that you’re doing to help families. I truly applaud you.