Siblings of Complex Care Kids

Podcast Transcript

Speaker 4:

Welcome to Little Health: A Cleveland Clinic Children's Podcast that helps navigate the complexities of child health one chapter at a time. In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now here's today's host.

Dr. Mayme Marshall :

Welcome back to Little Health. I'm your host Dr. Mayme Marshall, a pediatric cardiologist at Cleveland Clinic Children's, and the director of patient Family Experience for the Division of Cardiology and Cardiovascular Medicine. When a child faces a complex medical condition like congenital heart disease, the entire family is affected, but often the sibling's experience can go unnoticed. Today, as part of our season on pediatric cardiology, we're discussing the important role siblings play in complex care families and the unique challenges they face. Our guests today are Madeleine Mohler, an older sister to congenital heart disease patient.

Madeleine Mohler :

Hi. Thanks for having me.

Dr. Mayme Marshall :

And as part of our series on pediatric cardiology, we are teaming up with our healthcare partners. This group offers a team approach, including medical providers, parents, and patients that analyze and advocate for better healthcare experience. We welcome our healthcare partner, Heather Ora.

Heather Ora :

Hi, I'm Heather Ora. I'm a mother of two. I have one heart wear and one heart healthy.

Dr. Mayme Marshall :

We're so happy to have you here. Madeleine, would you mind introducing yourself and telling us a little bit about you?

Madeleine Mohler :

Yeah. So I am 26 years old. Um, I am the second of four kids. So I have my older sister who is 29, my younger sister who is 22, and my brother Micah, who just turned 18. So he was born with hypoplastic left heart syndrome, um, and went through quite a few surgeries right off the bat. Um, and then when he was seven or eight, he received a heart transplant. So he spent quite a lot of time in the hospital.

Dr. Mayme Marshall :

Yeah, sounds like it. That's a lot of surgeries for a young person.

Madeleine Mohler :

(laughing) Oh, yeah.

Dr. Mayme Marshall :

And then to have a heart transplant. And how long was he in the hospital leading up to the heart transplant?

Madeleine Mohler :

Um, I think it was two or three months. And then he spent a good amount of time in the hospital after that through rehab clinics. He went to, um, an intensive feeding clinic after transplant as well 'cause he was tube fed for pretty much all his life up to then.

Dr. Mayme Marshall :

Okay. Wow. Take us back. Think a little bit about when your brother was first diagnosed. How did that impact you? How did it change your family dynamic?

Madeleine Mohler :

So I was in second grade when Micah was born and we were actually in the process of moving houses too. But I just remember being at school and like all excited for a little brother, you know? Well, before he was born, my mom had said something to us about how he was gonna need some extra help, some extra doctors, you know, everything was gonna be fine. But I didn't really understand all of that-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... at that point. And then when he was born, my dad brought us up to see him. And my parents were divorced. So my dad was helping with transport up to Cleveland. But I just remember the first time I met Micah, he was in this little box with all these wires hooked up to him and I was just really confused.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

And my older sister, she was talking to him nonstop and I just... I don't know. I just was kind of weirded out by it.

Dr. Mayme Marshall :

Yeah, that's totally fair. And I think that that's like a really nice example of how people just have different responses, like emotional responses to a medical environment. Like when I was in high school, that's when I first decided I wanted to become a doctor and I was visiting one of my friends who was diagnosed with cancer in the hospital. And I remember seeing kids like, you know, riding on tricycles with IV poles trailing behind them and thinking like, "Wow, this is so beautiful."

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

Like where a place, even though kids have been dealt this crummy hand of cards, they can still be children and live.

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

Have a childhood.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And my sister, who is lovely, but she was like crying in the waiting room. Like for her it was just like... It was really sad for her that that kids were dealt this hand. So it's, it's interesting how you highlight that.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

How like one sister was like, she just saw her little brother and then you are sitting there and you're seeing all the machines.

Madeleine Mohler :

It was like shocking.

Dr. Mayme Marshall :

Yeah. You're like, this is not the way it was with my other little sibling-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... that was born. (laughs) Yeah, well thanks for sharing that.

Madeleine Mohler :

So as we were all growing up, um, we would, uh, all go with my mom to doctor's appointments because at that point we're too young to stay at home.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

Um, so it would be us all in the minivan and we would go up. Like my mom would sometimes get annoyed because we were kids and we, we could be a lot, sometimes.

Dr. Mayme Marshall :

(laughing).

Madeleine Mohler :

We're still a lot when we're all together. But, yeah, we would go up to all the appointments. We would, uh, just have a good time, honestly like that. Those are some really good memories that I have. And we would always stop to get lunch somewhere. We would walk around. There was always like a playroom. And I remember playing air hockey with my sisters, and it was always a fight to see, uh, who would have two people on their team since there were three of us (laughing) while Micah was in his appointments.

Dr. Mayme Marshall :

I love that-

Madeleine Mohler :

It was crazy.

Dr. Mayme Marshall :

... so much. So even though, you know, you're doing something pretty mundane

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And pretty boring in kids' (laughs) definitions.

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

You were still able to find something that was fun or exciting-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... about the experience.

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

And your mom, it sounds like is a superhuman.

Madeleine Mohler :

Oh, she is for sure.

Dr. Mayme Marshall :

And, and made it-

Madeleine Mohler :

I know how she did. (laughing).

Dr. Mayme Marshall :

Yeah. Like made something really special, like as almost, uh, um, a new tradition.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

To create, like, "We're gonna go out to a special lunch-"

Madeleine Mohler :

Right, right.

Dr. Mayme Marshall :

"... after the appointment." That's really wonderful.

Madeleine Mohler :

That kind of stuff, it became the new normal-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... for our lives, you know? And as he got older, he started to develop some behavioral issues, so as a little more of a, a struggle just to be like the normal family out in public, but I mean, we just, you know, it is what it is.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

We went with it.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

You know, figured it out.

Dr. Mayme Marshall :

That's awesome. So, uh, enjoying... I mean, it's so important that we have different, um, activities like child life team to help-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... support kids, but it's... Thank you for highlighting that-

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

... Madeleine, is that it's, it's even important for our siblings to have that entertainment and fun when they're going to appointments, so...

Heather Ora :

I think one is so nice about that journey is that Micah had his, his siblings with him.

Dr. Mayme Marshall :

Mm-hmm.

Heather Ora :

That each hardship that, you know, was happening, he had his fam- family still there supporting him. So I think that was a very good job that mom did.

Madeleine Mohler :

Oh, yeah. I agree. I couldn't imagine like not just being around with him all the time. I mean, I took him to school this morning and we were joking around the whole 10-minute drive, even though we were (laughs) both tired. It was 7:00 AM and we're like, "Neither of us wanna be awake right now, but we're, we're doing it.

Heather Ora :

Right, right. It's a good distraction, especially me personally with my journey with my own son. Um, I didn't have that distraction for him. I didn't have a sibling or someone, you know, to make it fun. So, yes, when you don't have your siblings as parents have to figure out how to get more creative to make it not such a cumbersome moment.

Dr. Mayme Marshall :

Yeah. So you're relying when you don't have siblings-

Heather Ora :

Right.

Dr. Mayme Marshall :

... to help distract and entertain.

Heather Ora :

Right.

Dr. Mayme Marshall :

You're relying on child life.

Heather Ora :

Child life.

Dr. Mayme Marshall :

And the nurses. And your own family.

Heather Ora :

Yes, and the staff.

Dr. Mayme Marshall :

Yeah.

Heather Ora :

Yeah, yeah, yeah.

Dr. Mayme Marshall :

Yeah, that's fantastic. So I can imagine like going through this shared experience with your brother as he went through in and out of the hospital and whatnot. I bet the bond got really tight.

Heather Ora :

Oh, yeah.

Dr. Mayme Marshall :

I mean, it sounds like you're an amazing older sister taking him to school.

Madeleine Mohler :

(laughing) I mean, I try. I try.

Heather Ora :

Yeah.

Madeleine Mohler :

But, uh, yeah, he's... I love going to support him. He's does karate now and he has a test for his black belt, uh, I think next week or the week after. And I really like, I don't wanna go see it because I don't have any interest in karate, but like (laughing) I'm gonna go, you know? He shows up for... Well he, he gets dragged to like my events as I was growing up, but-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... I'm still gonna go, show him that we're there. Always got his back.

Dr. Mayme Marshall :

Just breaking some boards and-

Heather Ora :

Right.

Madeleine Mohler :

Uh, I haven't been to one of his tests since, I think, he moved up to like a green belt. So I have no idea what to expect with this one. (laughing) Like, I better be extra nice to him or else he's gonna start breaking my ankles.

Dr. Mayme Marshall :

Yeah, exactly. Exactly. The, the role he is no-

Madeleine Mohler :

Oh.

Dr. Mayme Marshall :

... longer your, your little medically, complex child.

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

That needs to be protected. He's the one protecting you. (laughing).

Madeleine Mohler :

Yeah.

Heather Ora :

Well, and how, how old is Micah now too?

Madeleine Mohler :

He's 18.

Heather Ora :

I love it. Yes.

Madeleine Mohler :

Like, I still see him as like, "Oh, you're just my little brother." But no, he's, he's an adult now.

Heather Ora :

Yeah.

Madeleine Mohler :

It's crazy. Everybody's grown.

Dr. Mayme Marshall :

How do you feel like your experience going in and out of hospitals as a young child supporting your brother, um, distracting him, you know, listening to medical speak between your parents and the medical team? How has that shaped you today? Like how has that impacted your future aspirations or your just day-to-day life?

Madeleine Mohler :

Whenever I was in high school, I really, really wanted to be a doctor.

Dr. Mayme Marshall :

Oh, yeah?

Madeleine Mohler :

And so I like took that path and everything. And it was absolutely not for me. (laughing) Like it... I know-

Dr. Mayme Marshall :

It's a long road.

Madeleine Mohler :

I know a lot of the terms and everything. My best friend, she just got matched with her surgical residency and like-

Dr. Mayme Marshall :

Oh, congrats.

Madeleine Mohler :

... like, "Go you, girlfriend." But that's-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

I could not. Yeah. It's, it's not it. But I mean now I'm going, I'm finishing up my degree in healthcare admin.

Dr. Mayme Marshall :

Oh, amazing.

Madeleine Mohler :

So like, all of that history has kind of helped me, like have a leg up in some of my courses, you know?

Dr. Mayme Marshall :

Absolutely.

Madeleine Mohler :

Because I know a lot of the terms already. But yeah, like now going into hospitals and things, it kind of freaks me out. Like my mom, she um, had to get just a routine surgery. I drove her up and like sat in the waiting room and I don't know if it was like some kind of panicky type thing, but like, as soon as I got the call that everything is good, she's in recovery, we'll get you up here in like 10, 15 minutes. Like, I went and like, I got nauseous and like ended up throwing up in the bathroom 'cause I just... I don't know what happened, but it just freaked me out so bad.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

I don't like doctors. Like whenever I need help with something like, it's just... I don't know. It's-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

It's not it for me.

Dr. Mayme Marshall :

Well, I can understand that. Um, you've obviously been through a lot and there's probably a little post-traumatic-

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

... stress of just like, when you probably even pull up to Cleveland Clinic-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... to do an interview like this.

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

I'm sure your heart beats a little bit different of just-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... thinking about your experiences, um, in, in past years. But, um, well that's fantastic. I love that you're going into the healthcare administration and I think it's important to know that not everyone has to be a doctor in the healthcare field.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

Or to make a big difference in the medical community.

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

Because we have tons of gorgeous careers out there, like occupational therapists or physical therapists or, I mean, um, teachers even. We have school teachers that come in and help support education for our kids that are in the hospital for a prolonged admission. Um, we have lab tech.

Heather Ora :

Yeah. There is a lab tech.

Dr. Mayme Marshall :

There is a lab tech. So, um, you know, we have child life specialists. We have nurses. We have... You know, run the gamut. So, um, I think it's awesome that you can take your experience that you've learned from walking through this with your brother and you can really use that to help shine light on future families.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

So that's awesome. Congratulations.

Madeleine Mohler :

Thank you. I'm excited.

Heather Ora :

Um, I really wanted to tap into that sibling perspective. And with that being said, how has your experience with your brother? How has that increased your empathy for others with special circumstances? If you could tell us a story or give us an example.

Madeleine Mohler :

I have so much empathy for other people going through even something similar to this, because I remember throughout high school, like when his behavioral issues started to kind of progress and get a little worse, um, we would be at like my band concert or my sister in middle school, her band concert or some kind of event. And he would end up just like having a meltdown because he didn't wanna be there. He didn't wanna just sit even though it was, it wasn't that long. (laughing) But, um, but like, that was like embarrassing almost. And like, I hate to say that, but I felt embarrassed.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

You know, I'm in high school and, you know, everyone knows that this kid is my brother 'cause it's a small town.

Dr. Mayme Marshall :

Right.

Heather Ora :

Right.

Madeleine Mohler :

And the community was such a big support throughout all of his transplant and everything, so everybody knew everything. So like, I don't think they really thought anything of it, but me personally, and like, this is a reflection of me somehow. So it was-

Heather Ora :

Right, right.

Madeleine Mohler :

... it was kind of hard to deal with that. So anytime I see anything, even like a kid who might not have any special needs, like in the grocery store freaking out, like I just, it is what it is, you know?

Heather Ora :

Mm-hmm.

Madeleine Mohler :

I tell the mom she's doing a good job.

Dr. Mayme Marshall :

Yeah. So lots of extra empathy for other families that are kind of going through something similar. But I, I wanna talk a little bit more about that because I think that's the heart of what we're trying to get to is-

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

And it's okay to feel embarrassed about your little brother, you know?

Madeleine Mohler :

(laughing) Right.

Dr. Mayme Marshall :

Like, yeah, it can be embarrassing and like, that's okay. I think sometimes just calling out those feelings and validating them are just such an important part of your experience. Like, you don't have to feel shame or you don't have to feel embarrassed about feeling embarrassed, (laughing) you know? So, Maddie, being a teenager is hard, period. Can you take us back to when you're a teenager and you're going through all the stresses of being a normal teenager and then you have, um, stressors of your brother's medical conditions on top of that. What can we learn from those days or what seemed to make that phase of life easier for you?

Madeleine Mohler :

Music for sure was what I just kind of threw myself into.

Dr. Mayme Marshall :

Okay.

Madeleine Mohler :

Just like whenever we would get updates on Mike in the hospital pre-transplant. So he was... Uh, I believe he was admitted mid to late September and then put on the transplant list the next month, and then was in the hospital until December when he got his heart transplant, then went through all the rehab, all of that.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

So any updates we would get, my mom would text us and I would be at school.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

So like a lot of that as he was like getting worse and worse and worse. I would be in... Oh, was it third period English? With a teacher I really didn't like. And I was just like, "This is the worst time of day." (laughing) Like, 'cause I would get all these updates and I just... I don't know. It was a lot to deal with and I didn't wanna like, feel the feelings because, you know, I'm at school. I'm not gonna go cry at school.

Dr. Mayme Marshall :

Right.

Madeleine Mohler :

So band would be the last class of the day and we would have like an intervention period at the end of the day.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

And I didn't need any of that intervention stuff, so I just went back to the band room and just practiced.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

And I really think if I didn't have that extra time, music would not be as big of like a part of my life as it is now.

Dr. Mayme Marshall :

Yeah. So really channeling kind of like your creative.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And your emotional experience, like into your... What, what instrument do you play?

Madeleine Mohler :

Flute.

Dr. Mayme Marshall :

You play flute?

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

Oh, I love it. Um, that's beautiful. So I guess it sounds like your advice would be to find something-

Madeleine Mohler :

Like some kind of niche, yeah.

Dr. Mayme Marshall :

... a hobby. Something that you love to kind of like spend that extra time.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

To really become an expert-

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

... um, in your field. Do you still play?

Madeleine Mohler :

Yes, I do. So not as much as I would like. Um, but every year I do the pit orchestra for, um, my high school's, uh, musical that they do. This year they did Anastasia.

Dr. Mayme Marshall :

Oh.

Madeleine Mohler :

It was, it was fantastic. They did-

Dr. Mayme Marshall :

yeah.

Madeleine Mohler :

... so good with it. And music was really fun.

Dr. Mayme Marshall :

Wonderful.

Madeleine Mohler :

So it's the same group that comes back every year and we just have a good time.

Dr. Mayme Marshall :

Oh, that's fantastic. That's awesome to hear. What else? Sounds like maybe texting you in the middle of the day.

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

Was something that was a stressor for you.

Madeleine Mohler :

Oh, yeah. It was.

Dr. Mayme Marshall :

Like what, what could have been done a little bit differently for you? Or what would be your advice to other parents out there that maybe that could have made that phase of life easier for you?

Madeleine Mohler :

That like, circumstance is kind of difficult because part of me, I don't wanna wait until the end of the school day to find out like, new information because like, I just, I wanna know, so I-

Dr. Mayme Marshall :

Right. You don't wanna be left out.

Madeleine Mohler :

Right, right.

Dr. Mayme Marshall :

You wanna be informed.

Madeleine Mohler :

Like some of the things, I don't know what they're talking about, but I just, I wanna be aware.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

So I can figure it out on my own or ask questions, but at the same time, so I don't wanna wait to find out. But, you know, it's like getting a random message in the middle of the day. And it would be in a group chat with both of my sisters. So my older sister, she was off at school. She went to Kent. And then my younger sister, she was in, I think, sixth grade at the time. So like, that's a lot on her too.

Dr. Mayme Marshall :

Yeah. The emotional regulation of a-

Madeleine Mohler :

So.

Dr. Mayme Marshall :

... sixth grader is a lot different than a college student.

Madeleine Mohler :

Yeah.

Heather Ora :

Yeah.

Madeleine Mohler :

Yeah. So, I don't know. That one is a hard one. I don't know what I would, would've wanted her to do differently-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... in that case.

Dr. Mayme Marshall :

Yeah. It's possible, like, I guess as I'm just, I'm... I don't know. I don't know the answer. I don't think there is a right answer.

Madeleine Mohler :

Oh, no. I don't think so either. (laughing)

Dr. Mayme Marshall :

It's gonna be definitely different for every family, but it might be if you had the expectation that you get an update at the end of the day, or maybe there's like a-

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

... 4:00 PM update that your mom would send about, like, the events of the day.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And maybe you could kind of like mentally prepare for that or be, you know, in a place-

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

... where if it was bad news that you could feel those emotions.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

Maybe that would've worked, maybe it wouldn't, but I guess it's always like something to kind of-

Madeleine Mohler :

Right, right.

Dr. Mayme Marshall :

... feel out with your family of, like, I can understand the, uh, desire to want to be informed. I think that's-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... a hard thing for parents. I mean, uh, you can probably talk to this, Heather, about like-

Heather Ora :

Yeah.

Dr. Mayme Marshall :

... how much information do you give your kids? How much is too much? What can they handle? Like, how do you navigate that as you're telling-

Heather Ora :

Right.

Dr. Mayme Marshall :

... your children or your daughter about what's going on medically.

Heather Ora :

I have to plan accordingly what information I wanna even share to my son who, um, has the heart defect. So I have to be able to decide when's a good time to even tell him, um, when he has certain doctor's appointments. Any big events that are coming up, I am, I always have to be very careful and have a plan of what I'm gonna let him know what's next that is gonna be on his agenda, what he'll have to do, part of his responsibilities, um, dealing with congenital heart defects.

So when we're dealing with, you know, procedures or doctor's appointments, lab draws, there's a lot of anxiety that come with that. And I think that taps in, um, Maddie, to your anxiety, you know, that you have, when, you know, when there's a lot going on with your brother. It's a lot to take and I definitely feel that when you're already busy or committed in school or at your job place, wherever you may be, to get, um, instant live notifications of, um, a procedure of what's going on.

It's, it's definitely anxiety driven and you definitely have to compartmentalize. And even myself, when I've had my own notifications or alerts of what's going on with my son, especially doing through an open heart surgery, it's, um, there's a lot of compartmentalization that takes place and definitely-

Madeleine Mohler :

Mm-hmm.

Heather Ora :

... back to you, Maddie, when you're dealing with a big day. I feel for me, I wouldn't want to know what's going on until I had a safer space to digest all that information that you're getting.

Dr. Mayme Marshall :

I think the idea of compartmentalization is an important one.

Heather Ora :

It's an inco- important coping mechanism too.

Dr. Mayme Marshall :

Absolutely. Because there's times where we can feel safe and like really feel our feels. And there's times where like you're in the middle of a concert. (laughing).

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

You gotta, you gotta finish your solo. You gotta get through it.

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

And then maybe when you're in the comfort of home, you can kind of feel your feels. But I would say the part that I really wanna emphasize is it's so important to then open that box-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... that you've shoved all your emotions into.

Madeleine Mohler :

Oh, yeah.

Dr. Mayme Marshall :

And start picking them apart. And so what has been helpful for you? I mean, what's been like a safe place? Or what kind of tools have you learned to kind of... When you're trying to compartmentalize your emotions just to get through a school day, then how do you kind of unpack those things and like work through these experiences?

Madeleine Mohler :

So when there was like, um, like a really bad update, like, "Okay, he's getting worse. Like, we need this heart soon or-"

Dr. Mayme Marshall :

Right.

Madeleine Mohler :

"... like things are not gonna go well," I would like get that update and I would just kind of be, I don't know, just off my game for the most part, which-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... high school was terribly easy for me. So I was bored all the time. I never really like did anything. Like, I would finish my homework in five minutes and then just like, sit there. So I would, you know, read books just to like, distract myself. Then it would be time to go to band and that would be a great distraction. And my band director that I had, he was fantastic. Like, we got really close. He helped me through a lot of that stuff. And then, you know, when I would get home... Uh, at that time I didn't really wanna like talk to my sisters, you know, because, you know, that clashy teenage years. Now, like with issues that he's had since transplant now that we're all grown, like he had cancer a few years ago.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

Um, so whenever we were going through all of that, I found out when I was at work, actually, I'm a bartender.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

So that was a little hard to take 'cause I mean, you go through all this heart stuff and then all of a sudden cancer comes into play.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

Like it's so unfair.

Dr. Mayme Marshall :

No. He's been through enough.

Madeleine Mohler :

It's completely in left field. Like, I don't know where that came from.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

So I ended up going home and, like, my boyfriend was there and he knew what was going on, and he like, just gave me a hug and I just had to like, kind of let it all out. And then my sisters and I got together the next day and we just, we talked. And they've always been a great support, especially now that we're older and like our life stages are not the same, but more similar.

Dr. Mayme Marshall :

Yeah. Yes.

Madeleine Mohler :

So, so we, we definitely are like a unit, the three of us.

Dr. Mayme Marshall :

That's amazing. And I think it's an important, important kind of pearl to kind of (laughs) pull outta this conversation is that even if you're not unpacking it at the end of the day or at the end of the year, or in the end of five years, like, you can still work on kind of like revisiting-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... those experiences and realizing what you learned or how it impacted you.

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

Um, and it sounds like you're doing that work now and-

Madeleine Mohler :

Oh. I mean, I was... (laughing) The whole drive up here, I was on the phone with my older sister and we were just-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... Talking about all kinds of random stuff that's happened throughout our lives, you know?

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

Like, that's pretty much all we do anymore.

Dr. Mayme Marshall :

Yeah. And it certainly doesn't define you-

Madeleine Mohler :

No.

Dr. Mayme Marshall :

... who you are, Maddie.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

But it's like made such a, you know, important impact and pivotal change on who you are. And as, as a physician who's sometimes providing those updates to a family, and, you know, maybe I'm talking to the patient and their caregivers, you know, their mom or their, whatever their family support unit is, who's in the hospital. And for me it's really, it's a good reminder to realize it's not just the people in the room. It's like this huge community. It's sisters and band directors.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And boyfriends. And it's this whole community that is mourning and celebrating that news.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

So it really does make a huge impact. Any other like, coping mechanisms or strategies?

Madeleine Mohler :

Um, I, I did journal a lot during all of that too. Just like my, my issue with journaling was always that I wanted it to be perfect. So like, like I was writing a paper for school, and then once I got out of that I was like, "Just write down the thoughts that are going through your head." So it's always like half sentences of everything, but like, just getting that out and on paper and then I'm like kind of reading it and like, "I, I can kind of understand like what I need to do next." You know what I mean?

Heather Ora :

Mm-hmm.

Madeleine Mohler :

So, I mean, that's, that's important for me, I think because I, I always have so many things going on in my head. Always. Like, I'm always aware of what's going on around me, what other people might be feeling. So actually putting that on paper, I can figure out what I need and what I need to prioritize.

Dr. Mayme Marshall :

I love that so much. And, you know, as a medical provider and I've gone through phases of my career where my heart feels really, really heavy, (laughs) where, you know, a patient has really impacted me on an emotional level. And I have tried to develop my own little tool kit (laughs) of strategies. And one of the things that I find really helpful is writing my patient a letter. And this is not for their eyes. This is only for my eyes. (laughing) But it's my way of, you know, spending 10, 15 minutes of dedicated time of brain power where I am just like... Usually it's a letter of gratitude, like thanking them for letting me be a part of their journey and, and just, you know, honoring their journey. And so to me it's similar to your strategy.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

Is it's not to be read, it's not to be given, it's just to like say that, "I'm taking this moment in time to really honor that person with my, um, intention."

Madeleine Mohler :

Mm-hmm .

Dr. Mayme Marshall :

And so, um, so I love that. It doesn't need to make sense. It can be words. It could be colors. It could be whatever. But I think having a place to put that down is really powerful. Do you ever revisit them now?

Madeleine Mohler :

No, I got rid of them whenever I moved. Um, and I haven't done much journaling a whole lot 'cause now I just talk. Like I.

Dr. Mayme Marshall :

That's so cool.

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

You can always fall back on when you need it

Madeleine Mohler :

Yeah. I just sit there and I'm just rambling-

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

... on and on and on. You know, like, it doesn't mean to make sense, but I, like, I talk to my dog now.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

You know, we're home alone all day and I'm... We're just telling stories, you know?

Dr. Mayme Marshall :

When you decided to get rid of those papers, like when you had your Marie Kondo moment of... (laughing)

Madeleine Mohler :

It, it was tough. It was tough.

Dr. Mayme Marshall :

Simplify (laughing) like, what was that like for you? Was it a little-

Madeleine Mohler :

They...

Dr. Mayme Marshall :

... bit of closure or what did that feel like?

Madeleine Mohler :

So I actually forgot about them.

Dr. Mayme Marshall :

Uh-huh.

Madeleine Mohler :

They were in like a box in one of my rooms in my apartment. So we were getting ready to move into a house. Um, and I was just kind of going through my stuff so we didn't have to like move as much, you know?

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

And I found them and I was just like... I don't know. It was kind of heavy. I... Like, I didn't really know what to do with them. So I kind of like flipped through a couple of 'em and I'm like, "Uh, I don't know if I wanna get back in that headspace or not, you know?"

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

It was a lot. And then I, I ended up recycling them. (laughing) Make them away, you know? So they're good for the earth. (laughing)

Dr. Mayme Marshall :

I love it. And then the way recycling those, like moving forward.

Heather Ora :

Yeah.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

It was probably, maybe you felt a little bit lighter-

Madeleine Mohler :

Yeah.

Dr. Mayme Marshall :

... after that even, like, of saying, "This was a phase of my life." You honor that phase with these documents that you're holding.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And then you make something. You make-

Madeleine Mohler :

You move forward.

Dr. Mayme Marshall :

... uh, a new textbook out of them with recycled papers. (laughing) Um, that's lovely.

Heather Ora :

So, Maddie, um, as a mother of a six-year-old, uh, little girl, what would be your advice for other parents of a child with chronic medical conditions and how to support the other children involved, um, that don't get as much attention put on them?

Madeleine Mohler :

Um, I would say just be... Do your best to be present. You know, support them in their activities, like, with my extracurriculars with band and like marching band, concert band, solo and ensemble, all kinds of stuff. There was a definite difference in how I felt when my mom was there and when she wasn't. My mom always tried her best to be at all of her soccer games, you know, track meets, things like that. And it, it makes a difference. It doesn't seem like much, but just that support there. Like, even if they're not cheering in the crowd or not clapping the loudest, they're still there for you.

Heather Ora :

I have a question piggyback off that. Does it have to be the parent to support you or could it be another family matter and does that matter? And how much does it matter?

Madeleine Mohler :

Um, I think it, it can definitely be another family member. I remember, uh, it was my first concert as, uh, first chair. So that was a big deal for me.

Dr. Mayme Marshall :

Big deal, yeah.

Madeleine Mohler :

Like my, my mom, my dad was there, my little sister was there, my brother was there.

Heather Ora :

Uh-huh.

Madeleine Mohler :

And my older sister, she was away at college. Like only Kent. But I didn't know if she was gonna be able to make it down. And she surprised me-

Heather Ora :

Oh.

Madeleine Mohler :

... to show up to that concert. And like, it... I just... It felt so good. I have a picture, um, from way back of the four of us of like-

Heather Ora :

Oh, that's so great.

Madeleine Mohler :

All three of my siblings giving me this big giant hug after the concert. It meant a lot.

Heather Ora :

Mm-hmm.

Madeleine Mohler :

So it doesn't necessarily have to be a parent, but I mean, just making sure that they can see the effort is being put forth.

Heather Ora :

Right.

Madeleine Mohler :

Because you, you can tell a difference when there's not.

Dr. Mayme Marshall :

Right.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

Right, right.

Dr. Mayme Marshall :

Yeah. Or if that concert would've happened in a time when your brother was in the hospital and maybe your mom felt like she couldn't step-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... away from bedside, what do you think she would've done to try to make you feel special in that moment?

Madeleine Mohler :

I think she would've had, um, probably have one of my sisters record it and then so she can watch it back and then call me afterwards.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

But she would've made sure that all of my family was there, like my sisters and everything. Maybe even some cousins. Just 'cause why not?

Dr. Mayme Marshall :

Yeah. Using your community, using that.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

Even if you can't physically be there as a parent.

Madeleine Mohler :

Right.

Dr. Mayme Marshall :

Trying to represent or FaceTime.

Madeleine Mohler :

Mm-hmm. Or you know, (laughing) and now with technology, there's so many ways that maybe she could even watch on the video remotely.

Dr. Mayme Marshall :

I know that, um-

Heather Ora :

Mm-hmm.

Madeleine Mohler :

... for a really long time she felt guilty leaving my brother whenever he was admitted.

Dr. Mayme Marshall :

Absolutely. [inaudible 00:28:34]

Madeleine Mohler :

And it wasn't until other heart moms, uh, told her, "You need to get outta here."

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

"Like, just take a day, he'll be fine. He's taken care of, but you need to take some time for yourself and for your other kids." So that was, that was a big one.

Heather Ora :

Yeah, yeah. That's when us role as parents, we do have to step away from the hospital and just fill in that seat with someone else.

Madeleine Mohler :

Oh, yeah.

Heather Ora :

Takes a village.

Dr. Mayme Marshall :

Yeah, for sure. For sure. Well, what else, Maddie? What else, what else would you wanna tell eight-year-old you about your future journey?

Madeleine Mohler :

Probably that it's, it's gonna be okay.

Dr. Mayme Marshall :

Mm-hmm.

Madeleine Mohler :

You know, no matter what happens, like you have your family. You know, they'll help you get through it. Just keep up with those bonds with the people you love.

Dr. Mayme Marshall :

Yeah, yeah.

Madeleine Mohler :

I couldn't imagine what my life would be right now if I wasn't close with my sisters.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

They're just some of the best people in my life.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

For sure. (laughs).

Dr. Mayme Marshall :

So take take care of your family. Invest in a hobby like the flute.

Madeleine Mohler :

Oh, yes. Yep. (laughing)

Dr. Mayme Marshall :

And then use your gifts and empathy to, um, continue carrying forward into a career-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... that will continue to benefit many, many families. So that's fantastic. Well, we are so happy that you have spent this time with us. And dug, opened that box (laughing) and tap into-

Madeleine Mohler :

We're gonna close it back up, right.

Dr. Mayme Marshall :

... some of those emotions so we... I know it's not an easy practice, so we we really appreciate you being here-

Madeleine Mohler :

Yeah, of course.

Dr. Mayme Marshall :

... and sharing a little bit about that untold story of-

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

... what it's like to be a sibling.

Madeleine Mohler :

It was really like... It was kind of hard to get into this mindset because it's always been Micah.

Dr. Mayme Marshall :

Yeah.

Madeleine Mohler :

You know? So it's never really been about me and like... So it's hard. It feel, feels selfish (laughs) you know, like talking about all this.

Dr. Mayme Marshall :

Well, there you go. I mean, we validate that again.

Madeleine Mohler :

(laughs)

Dr. Mayme Marshall :

It's not selfish-

Heather Ora :

Right.

Dr. Mayme Marshall :

... to talk about you.

Madeleine Mohler :

Mm-hmm.

Dr. Mayme Marshall :

And to, to focus on your experience and all of this. But, um, we so appreciate it. So thank you for being here.

Madeleine Mohler :

Of course. Thanks for having me.

Heather Ora :

Yes. Thank you so much for your time.

Dr. Mayme Marshall :

Awesome. Uh, and, Heather, thank you so much for being here. Can you tell us a little bit about how to get involved with Healthcare Partners?

Heather Ora :

Yeah. Healthcare Partners, it's a great group of parents who wanna advocate for their little ones. And if you would like to get any more information, you can email childrenshealthcarepartners@ccf.org.

Dr. Mayme Marshall :

Wonderful. Thank you so much.

Heather Ora :

Thank you.

Dr. Mayme Marshall :

The bond between siblings and complex care families is often incredibly strong. We celebrate these unique connections and recognize the important impact they have on their medically complex brothers and sisters. If you'd like to schedule an appointment with the Cleveland Clinic Children's pediatric cardiologist, please call 216.445.5000.

Speaker 4:

Thanks for listening to Little Health. We hope you enjoyed this episode. To keep the Little Health tips coming, subscribe wherever you get your podcasts, or visit clevelandclinicchildrens.org/littlehealth.