Siblings of Complex Care Kids

For the sister of a complex care patient, growing up with a brother born with hypoplastic left heart syndrome and undergoing a heart transplant profoundly shaped her life. In this episode, she shares the raw, emotional, and often unexpected journey of her family's experiences with chronic illness and frequent hospital visits, revealing how these challenges forged an unbreakable bond.

Transcript

Speaker 2 (00:11):

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.

Speaker 3 (00:38):

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.

Speaker 5 (01:14):

Hi. Thanks for having me.

Speaker 3 (01:15):

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.

Speaker 4 (01:31):

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

Speaker 3 (01:36):

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

Speaker 5 (01:43):

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.

Speaker 3 (02:08):

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

Speaker 5 (02:12):

(laughing) Oh, yeah.

Speaker 3 (02:13):

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

Speaker 5 (02:19):

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.

Speaker 3 (02:33):

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?

Speaker 5 (02:44):

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-

Speaker 3 (02:44):

Yeah.

Speaker 5 (03:04):

... 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.

Speaker 3 (03:18):

Mm-hmm.

Speaker 5 (03:18):

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.

Speaker 3 (03:25):

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."

Speaker 5 (03:25):

Mm-hmm.

Speaker 3 (03:52):

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

Speaker 5 (03:53):

Right.

Speaker 3 (03:58):

Have a childhood.

Speaker 5 (03:59):

Mm-hmm.

Speaker 3 (04:00):

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.

Speaker 5 (04:00):

Mm-hmm.

Speaker 3 (04:13):

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.

Speaker 5 (04:18):

It was like shocking.

Speaker 3 (04:19):

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

Speaker 5 (04:19):

Mm-hmm.

Speaker 3 (04:22):

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

Speaker 5 (04:26):

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.

Speaker 3 (04:34):

Yeah.

Speaker 5 (04:34):

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.

Speaker 3 (04:35):

(laughing).

Speaker 5 (04:43):

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.

Speaker 3 (05:07):

I love that-

Speaker 5 (05:07):

It was crazy.

Speaker 3 (05:08):

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

Speaker 5 (05:12):

Mm-hmm.

Speaker 3 (05:12):

And pretty boring in kids' (laughs) definitions.

Speaker 5 (05:16):

Yeah.

Speaker 3 (05:16):

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

Speaker 5 (05:19):

Mm-hmm.

Speaker 3 (05:19):

... about the experience.

Speaker 5 (05:19):

Yeah.

Speaker 3 (05:20):

And your mom, it sounds like is a superhuman.

Speaker 5 (05:23):

Oh, she is for sure.

Speaker 3 (05:24):

And, and made it-

Speaker 5 (05:24):

I know how she did. (laughing).

Speaker 3 (05:26):

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

Speaker 5 (05:31):

Mm-hmm.

Speaker 3 (05:31):

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

Speaker 5 (05:34):

Right, right.

Speaker 3 (05:34):

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

Speaker 5 (05:35):

That kind of stuff, it became the new normal-

Speaker 3 (05:38):

Yeah.

Speaker 5 (05:38):

... 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.

Speaker 3 (05:50):

Yeah.

Speaker 5 (05:50):

We went with it.

Speaker 3 (05:51):

Yeah.

Speaker 5 (05:52):

You know, figured it out.

Speaker 3 (05:53):

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

Speaker 5 (05:53):

Mm-hmm.

Speaker 3 (06:01):

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

Speaker 5 (06:02):

Yeah.

Speaker 3 (06:04):

... 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...

Speaker 4 (06:11):

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

Speaker 3 (06:11):

Mm-hmm.

Speaker 4 (06:18):

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.

Speaker 5 (06:29):

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.

Speaker 4 (06:43):

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.

Speaker 3 (07:03):

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

Speaker 4 (07:03):

Right.

Speaker 3 (07:05):

... to help distract and entertain.

Speaker 4 (07:07):

Right.

Speaker 3 (07:07):

You're relying on child life.

Speaker 4 (07:09):

Child life.

Speaker 3 (07:10):

And the nurses. And your own family.

Speaker 4 (07:11):

Yes, and the staff.

Speaker 3 (07:12):

Yeah.

Speaker 4 (07:13):

Yeah, yeah, yeah.

Speaker 3 (07:14):

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.

Speaker 4 (07:26):

Oh, yeah.

Speaker 3 (07:26):

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

Speaker 5 (07:29):

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

Speaker 4 (07:29):

Yeah.

Speaker 5 (07:30):

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-

Speaker 3 (07:31):

Yeah.

Speaker 5 (07:49):

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

Speaker 3 (07:52):

Just breaking some boards and-

Speaker 4 (07:53):

Right.

Speaker 5 (07:53):

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.

Speaker 3 (08:05):

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

Speaker 5 (08:08):

Oh.

Speaker 3 (08:08):

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

Speaker 5 (08:11):

Right.

Speaker 3 (08:11):

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

Speaker 5 (08:15):

Yeah.

Speaker 4 (08:15):

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

Speaker 5 (08:17):

He's 18.

Speaker 4 (08:18):

I love it. Yes.

Speaker 5 (08:19):

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

Speaker 4 (08:24):

Yeah.

Speaker 5 (08:25):

It's crazy. Everybody's grown.

Speaker 3 (08:27):

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?

Speaker 5 (08:51):

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

Speaker 3 (08:54):

Oh, yeah?

Speaker 5 (08:55):

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

Speaker 3 (08:55):

It's a long road.

Speaker 5 (09:00):

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

Speaker 3 (09:00):

Oh, congrats.

Speaker 5 (09:06):

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

Speaker 3 (09:06):

Yeah.

Speaker 5 (09:08):

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.

Speaker 3 (09:14):

Oh, amazing.

Speaker 5 (09:14):

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

Speaker 3 (09:14):

Absolutely.

Speaker 5 (09:19):

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.

Speaker 3 (09:45):

Yeah.

Speaker 5 (09:45):

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

Speaker 3 (09:45):

Yeah.

Speaker 5 (09:52):

It's not it for me.

Speaker 3 (09:53):

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

Speaker 5 (09:59):

Yeah.

Speaker 3 (09:59):

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

Speaker 5 (10:04):

Mm-hmm.

Speaker 3 (10:04):

... to do an interview like this.

Speaker 5 (10:04):

Yeah.

Speaker 3 (10:05):

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

Speaker 5 (10:07):

Mm-hmm.

Speaker 3 (10:08):

... 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.

Speaker 5 (10:22):

Mm-hmm.

Speaker 3 (10:22):

Or to make a big difference in the medical community.

Speaker 5 (10:24):

Right.

Speaker 3 (10:24):

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.

Speaker 4 (10:41):

Yeah. There is a lab tech.

Speaker 3 (10:45):

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.

Speaker 5 (10:45):

Mm-hmm.

Speaker 3 (11:02):

So that's awesome. Congratulations.

Speaker 5 (11:04):

Thank you. I'm excited.

Speaker 4 (11:06):

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.

Speaker 5 (11:24):

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.

Speaker 3 (11:54):

Yeah.

Speaker 5 (11:54):

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

Speaker 3 (11:55):

Right.

Speaker 4 (11:59):

Right.

Speaker 5 (11:59):

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-

Speaker 4 (12:00):

Right, right.

Speaker 5 (12:13):

... 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?

Speaker 4 (12:23):

Mm-hmm.

Speaker 5 (12:24):

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

Speaker 3 (12:25):

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-

Speaker 5 (12:26):

Right.

Speaker 3 (12:38):

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

Speaker 5 (12:39):

(laughing) Right.

Speaker 3 (12:42):

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?

Speaker 5 (13:21):

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

Speaker 3 (13:25):

Okay.

Speaker 5 (13:25):

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.

Speaker 3 (13:25):

Mm-hmm.

Speaker 5 (13:42):

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

Speaker 3 (13:45):

Yeah.

Speaker 5 (13:45):

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.

Speaker 3 (13:45):

Right.

Speaker 5 (14:05):

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

Speaker 3 (14:10):

Mm-hmm.

Speaker 5 (14:11):

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

Speaker 3 (14:16):

Mm-hmm.

Speaker 5 (14:16):

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.

Speaker 3 (14:22):

Yeah. So really channeling kind of like your creative.

Speaker 5 (14:22):

Mm-hmm.

Speaker 3 (14:26):

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

Speaker 5 (14:30):

Flute.

Speaker 3 (14:30):

You play flute?

Speaker 5 (14:30):

Yeah.

Speaker 3 (14:31):

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

Speaker 5 (14:37):

Like some kind of niche, yeah.

Speaker 3 (14:38):

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

Speaker 5 (14:38):

Mm-hmm.

Speaker 3 (14:42):

To really become an expert-

Speaker 5 (14:44):

Yeah.

Speaker 3 (14:44):

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

Speaker 5 (14:46):

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.

Speaker 3 (14:55):

Oh.

Speaker 5 (14:55):

It was, it was fantastic. They did-

Speaker 3 (14:55):

yeah.

Speaker 5 (14:57):

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

Speaker 3 (14:57):

Wonderful.

Speaker 5 (15:00):

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

Speaker 3 (15:03):

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

Speaker 5 (15:09):

Yeah.

Speaker 3 (15:10):

Was something that was a stressor for you.

Speaker 5 (15:11):

Oh, yeah. It was.

Speaker 3 (15:12):

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?

Speaker 5 (15:21):

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-

Speaker 3 (15:33):

Right. You don't wanna be left out.

Speaker 5 (15:34):

Right, right.

Speaker 3 (15:34):

You wanna be informed.

Speaker 5 (15:36):

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

Speaker 3 (15:38):

Mm-hmm.

Speaker 5 (15:38):

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.

Speaker 3 (15:58):

Yeah. The emotional regulation of a-

Speaker 5 (15:59):

So.

Speaker 3 (16:00):

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

Speaker 5 (16:02):

Yeah.

Speaker 4 (16:03):

Yeah.

Speaker 5 (16:03):

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-

Speaker 3 (16:08):

Yeah.

Speaker 5 (16:08):

... in that case.

Speaker 3 (16:09):

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.

Speaker 5 (16:15):

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

Speaker 3 (16:16):

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-

Speaker 5 (16:16):

Right.

Speaker 3 (16:24):

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

Speaker 5 (16:24):

Mm-hmm.

Speaker 3 (16:27):

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

Speaker 5 (16:27):

Right.

Speaker 3 (16:32):

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

Speaker 5 (16:35):

Mm-hmm.

Speaker 3 (16:35):

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

Speaker 5 (16:35):

Right, right.

Speaker 3 (16:39):

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

Speaker 5 (16:40):

Mm-hmm.

Speaker 3 (16:46):

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

Speaker 4 (16:51):

Yeah.

Speaker 3 (16:51):

... 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-

Speaker 4 (16:58):

Right.

Speaker 3 (16:58):

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

Speaker 4 (17:02):

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.

(17:36):

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.

(18:10):

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-

Speaker 5 (18:28):

Mm-hmm.

Speaker 4 (18:28):

... 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.

Speaker 3 (18:40):

I think the idea of compartmentalization is an important one.

Speaker 4 (18:44):

It's an inco- important coping mechanism too.

Speaker 3 (18:47):

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).

Speaker 5 (18:57):

Mm-hmm.

Speaker 3 (18:58):

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

Speaker 5 (18:58):

Yeah.

Speaker 3 (19:01):

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-

Speaker 5 (19:01):

Mm-hmm.

Speaker 3 (19:13):

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

Speaker 5 (19:14):

Oh, yeah.

Speaker 3 (19:15):

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?

Speaker 5 (19:39):

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

Speaker 3 (19:45):

Right.

Speaker 5 (19:46):

"... 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-

Speaker 3 (19:54):

Yeah.

Speaker 5 (19:55):

... 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.

Speaker 3 (20:30):

Yeah.

Speaker 5 (20:30):

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

Speaker 3 (20:36):

Mm-hmm.

Speaker 5 (20:36):

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.

Speaker 3 (20:42):

Yeah.

Speaker 5 (20:42):

Like it's so unfair.

Speaker 3 (20:42):

No. He's been through enough.

Speaker 5 (20:44):

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

Speaker 3 (20:47):

Yeah.

Speaker 5 (20:47):

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.

Speaker 3 (21:07):

Yeah. Yes.

Speaker 5 (21:07):

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

Speaker 3 (21:11):

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-

Speaker 5 (21:29):

Mm-hmm.

Speaker 3 (21:29):

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

Speaker 5 (21:35):

Right.

Speaker 3 (21:35):

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

Speaker 5 (21:37):

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

Speaker 3 (21:37):

Yeah.

Speaker 5 (21:42):

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

Speaker 3 (21:42):

Yeah.

Speaker 5 (21:45):

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

Speaker 3 (21:47):

Yeah. And it certainly doesn't define you-

Speaker 5 (21:48):

No.

Speaker 3 (21:50):

... who you are, Maddie.

Speaker 5 (21:50):

Mm-hmm.

Speaker 3 (21:50):

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.

Speaker 5 (22:21):

Mm-hmm.

Speaker 3 (22:21):

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

Speaker 5 (22:28):

Mm-hmm.

Speaker 3 (22:28):

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

Speaker 5 (22:38):

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?

Speaker 4 (22:39):

Mm-hmm.

Speaker 5 (23:04):

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.

Speaker 3 (23:20):

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.

Speaker 5 (24:05):

Mm-hmm.

Speaker 3 (24:06):

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."

Speaker 5 (24:17):

Mm-hmm .

Speaker 3 (24:17):

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?

Speaker 5 (24:29):

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.

Speaker 3 (24:36):

That's so cool.

Speaker 5 (24:37):

Yeah.

Speaker 3 (24:37):

You can always fall back on when you need it

Speaker 5 (24:38):

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

Speaker 3 (24:40):

Yeah.

Speaker 5 (24:40):

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

Speaker 3 (24:45):

Yeah.

Speaker 5 (24:45):

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

Speaker 3 (24:49):

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

Speaker 5 (24:56):

It, it was tough. It was tough.

Speaker 3 (24:58):

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

Speaker 5 (24:59):

They...

Speaker 3 (25:01):

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

Speaker 5 (25:02):

So I actually forgot about them.

Speaker 3 (25:04):

Uh-huh.

Speaker 5 (25:04):

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?

Speaker 3 (25:14):

Yeah.

Speaker 5 (25:14):

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?"

Speaker 3 (25:26):

Yeah.

Speaker 5 (25:27):

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)

Speaker 3 (25:36):

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

Speaker 4 (25:39):

Yeah.

Speaker 5 (25:40):

Mm-hmm.

Speaker 3 (25:40):

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

Speaker 5 (25:42):

Yeah.

Speaker 3 (25:42):

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

Speaker 5 (25:42):

Mm-hmm.

Speaker 3 (25:49):

And then you make something. You make-

Speaker 5 (25:51):

You move forward.

Speaker 3 (25:52):

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

Speaker 4 (25:59):

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?

Speaker 5 (26:17):

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.

Speaker 4 (26:50):

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?

Speaker 5 (26:59):

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.

Speaker 3 (27:08):

Big deal, yeah.

Speaker 5 (27:09):

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

Speaker 4 (27:09):

Uh-huh.

Speaker 5 (27:14):

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-

Speaker 4 (27:20):

Oh.

Speaker 5 (27:20):

... 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-

Speaker 4 (27:26):

Oh, that's so great.

Speaker 5 (27:27):

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

Speaker 4 (27:32):

Mm-hmm.

Speaker 5 (27:33):

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.

Speaker 4 (27:39):

Right.

Speaker 5 (27:40):

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

Speaker 3 (27:40):

Right.

Speaker 3 (27:40):

Yeah.

Speaker 5 (27:43):

Right, right.

Speaker 3 (27:44):

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-

Speaker 5 (27:44):

Mm-hmm.

Speaker 3 (27:50):

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

Speaker 5 (27:56):

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.

Speaker 3 (28:04):

Mm-hmm.

Speaker 5 (28:05):

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?

Speaker 3 (28:12):

Yeah. Using your community, using that.

Speaker 5 (28:12):

Mm-hmm.

Speaker 3 (28:15):

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

Speaker 5 (28:19):

Right.

Speaker 3 (28:19):

Trying to represent or FaceTime.

Speaker 5 (28:21):

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.

Speaker 3 (28:29):

I know that, um-

Speaker 4 (28:29):

Mm-hmm.

Speaker 5 (28:29):

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

Speaker 3 (28:33):

Absolutely. [inaudible 00:28:34]

Speaker 5 (28:34):

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

Speaker 3 (28:34):

Yeah.

Speaker 5 (28:38):

"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.

Speaker 4 (28:47):

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.

Speaker 5 (28:55):

Oh, yeah.

Speaker 4 (28:56):

Takes a village.

Speaker 3 (28:57):

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?

Speaker 5 (29:05):

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

Speaker 3 (29:07):

Mm-hmm.

Speaker 5 (29:07):

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.

Speaker 3 (29:16):

Yeah, yeah.

Speaker 5 (29:17):

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

Speaker 3 (29:20):

Yeah.

Speaker 5 (29:21):

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

Speaker 3 (29:23):

Yeah.

Speaker 5 (29:23):

For sure. (laughs).

Speaker 3 (29:23):

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

Speaker 5 (29:28):

Oh, yes. Yep. (laughing)

Speaker 3 (29:30):

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

Speaker 5 (29:37):

Mm-hmm.

Speaker 3 (29:38):

... 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-

Speaker 5 (29:50):

We're gonna close it back up, right.

Speaker 3 (29:51):

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

Speaker 5 (29:51):

Yeah, of course.

Speaker 3 (29:56):

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

Speaker 5 (29:56):

Mm-hmm.

Speaker 3 (29:59):

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

Speaker 5 (30:00):

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

Speaker 3 (30:06):

Yeah.

Speaker 5 (30:07):

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.

Speaker 3 (30:13):

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

Speaker 5 (30:16):

(laughs)

Speaker 3 (30:16):

It's not selfish-

Speaker 4 (30:17):

Right.

Speaker 3 (30:17):

... to talk about you.

Speaker 5 (30:18):

Mm-hmm.

Speaker 3 (30:18):

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

Speaker 5 (30:24):

Of course. Thanks for having me.

Speaker 4 (30:25):

Yes. Thank you so much for your time.

Speaker 3 (30:26):

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?

Speaker 4 (30:33):

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 Children's Healthcare Partners. Uh, childrenshealthcarepartners is all one word @ccf.org.

Speaker 3 (30:52):

Wonderful. Thank you so much.

Speaker 4 (30:53):

Thank you.

Speaker 3 (30:57):

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 2 (31:19):

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.