DAN: Well, we’ve never done this before.
DAN: So, this is exciting.
ROBIN: I know.
DAN: So, why don’t we start with you just introducing yourself?
ROBIN: Just say, hi, I’m Robin Ward. Yeah. That’s it.
DAN: You’re a single mom. Does that enter into the conversation?
ROBIN: Never. Do you walk up to someone and say, “Hi. I’m Robin, a single mom? Mother of a disabled child?”
DAN: So, you don’t normally say that.
ROBIN: No. Never.
Welcome to Redefine U, a podcast that explores what happens when we’re challenged to change our beliefs, our thoughts or even who we think we are.
Over the course of this season, with the help of storytellers and experts, we’ll delve into what it means to redefine yourself. Is it something that happens over time? Why is it easier for some more than others?
I’m Dan Baum and in this episode we’ll hear more from Robin Ward, a graphic designer in the Strategic Communications department at Anne Arundel Community College. As we hear her powerful story, we’ll also talk with Dr. Lori Perez, chair of the Psychology department at AACC, to learn what her discipline can tells us about the way humans handle change.
First, Robin’s story.
DAN: How old is Corey now?
ROBIN: She’s 27.
DAN: So, how has your relationship with your daughter changed or evolved over time?
ROBIN: We’re typical. She just told me last week that she was running away. I said, “Ok. Let me get the door. Yeah, we’re best friends. We fight like cats at times.
DAN: How would you describe Corey?
ROBIN: I would describe Corey as very vivacious. Joyful. Just happy. She’s just funny as hell. Always positive. She’s a music lover, a movie lover, a jokester – she’s just funny. I do say, once you meet Corey, you won’t forget her. She will imprint you in one way or another.
DAN: What were your expectations as you anticipated having a baby?
ROBIN: I was super excited, the only thing I can really reflect back on thinking is, you know, my brother's good at sports, good at trades, and I just didn't really having anything I identified with as being good at. And I do remember saying, "I want to be a good mom".
DAN: And then she was born.
ROBIN: She was born. Typical birth, and there wasn't anything at birth to indicate that there would be any complications. That was on a Saturday, and then on Tuesday we were notified by her pediatrician that there was something going on. They weren't sure what it was.
Apparently what happened that Tuesday morning was that she had become ashen while she was in the nursery. It was determined that she had a defect, two defects as a matter of fact, in her heart. So just six days later, she had her first open heart surgery.
DAN: Wow. Her first surgery?
ROBIN: Her first surgery. Had the first surgery, everything's great, she's developing normally, she's hitting all of her milestones, walking, talking, all of that great stuff.
Then her second open heart surgery was just 15 days prior to her second birthday.
DAN: So, tell me about that.
ROBIN: I remember there was a snowstorm that happened, so she's walking around the hospital. We're in the admission office and she's running around, not acting like somebody that's gotta have open heart surgery the next day.
Surgery went fine. They came out and said she was off the heart, lung bypass sooner than we anticipated, all looks good. I just felt something, I noticed something didn't feel right. And I noticed her trying to get her fingers to her mouth, but just was having trouble accomplishing that. And it felt like she kept pawing at me, it was just this weird, weird sensation or something that was going on. And I remember saying to people, "Is anybody else noticing anything?"
And then as the hours went by and the days went by it just got progressively worse. I always equate it to a slow burn that just keeps going deeper and deeper and deeper, and with each day she would lose even more function. The ability obviously to walk, to sit up, to swallow. Her body couldn't regulate its temperature.
DAN: Were they telling you anything?
ROBIN: They were just trying to explain it away – that it would be temporary. To the point, where I'm not getting any clarification, I'm getting different stories from the attending in the PICU, from the neurologist.
And I finally just said, "Enough. I want a meeting. I want it at this time at this place. I want these people around the table, and you need to tell me".
DAN: What did they tell you?
ROBIN: The one thing I remember them telling me is talking to me about institutions. Not that they weren't listening to me, they weren't probably thinking that I was accurate in my assumption or that Corey was still understanding what was going on.
DAN: They didn't believe she was?
ROBIN: No. I had a lollipop and I had one of those, I don’t know if you're familiar with them, but it's this pink sponge on a stick, if you're in a hospital you can wipe or rinse your mouth out with. So, I had one in each hand and I asked Corey if she wanted a lollipop to reach for the lollipop and it took every ounce of strength that she had to work her arm up and to be able to swing at it, and she went directly for the lollipop. And I'm like, "See! I knew she was in there."
DAN: So, what I'm hearing is you're fighting for your daughter.
ROBIN: Oh yeah!
DAN: What did they describe? Did they give some kind of prognosis? You were saying they were talking about institutional, but-
ROBIN: Her diagnosis?
DAN: And what did they say that was?
ROBIN: It's this involuntary movement from the insult to the brain. Corey's movement was crazy. She used to have to be sedated to take a nap, to sleep at night, just to calm everything down. But they-
DAN: When you say movement, her limbs are kind of like flailing?
ROBIN: Oh yeah, absolutely. To the point where when it was at its worst, it was so rhythmic that I would have to wrap her legs in gauze because she just would rub the skin down.
DAN: I'm trying to picture all of this. Physically she couldn't do anything for herself, is that…
ROBIN: Right. And still can’t.
DAN: And so cognitively was that slowed in any way? Tell me about the situation there.
ROBIN: She has an underlying syndrome, of the 22nd chromosome. It's called velocardiofacial syndrome, VCFS. And it's funny because obviously the injury from the heart surgery is visible, so that's what everybody focuses on and we tend to forget about the underlying syndrome.
DAN: For someone who doesn't know any of this background, they might meet her and think she might have cerebral palsy or something.
ROBIN: And that's what I tell people, because it is a form of that and that's the easiest way [crosstalk].
DAN: So people can grasp that?
ROBIN: Mm-hmm (affirmative).
DAN: What became your goal?
ROBIN: To give Corey the best life possible.
DAN: Was that conscious?
ROBIN: It was an immediate acceptance of this is what it is. I can't change what happened. And we're gonna make the best of it.
DAN: What helps you in that moment?
ROBIN: I don't know. It just came from within. I think the trust and the faith that things will get better, it was just there. It’s not something I went searching for. It just so crazy, because that whole can do attitude or positivity, I certainly didn't grow up in that type of environment. Not at all, as a matter of fact.
And I think when the situation arose with Corey, that's where I made the decision like things are gonna change.
When her daughter, Corey, experienced a traumatic brain injury during open-heart surgery, Robin didn’t dwell on why or how it happened. Instead she focused her energy on moving forward.
How are some people able to accept change so readily? Why do others struggle? In a moment, we’ll come back to Robin’s story, but before we do let’s learn how psychologists answer these – and other questions - about transformation.
LORI: I’m Lori Perez. I’m the department chair of Psychology here at Anne Arundel Community College and my background is in career development, and kind of identity development, as well as neuro-psychology.
DAN: Let’s start with the notion that we go through transformations at different parts throughout our lives. We’re constantly transforming. I believe this is familiar territory for psychologists? Can you tell me a little more about that?
LORI: Sure. So, I think when we look at how a person develops over time, there’s a couple of different theories.
First we can look at developmental theorists, like Erik Erikson who was the first theorist to look at development across the lifespan. He talked about a series of stages that we go through and crisis that we deal with. So, it starts in our adolescent years with who are we — and it’s not just about career development — but who are we spiritually, who are we in terms of our values, our passions, our interests. And then he moves forward to getting married, settling down, perhaps having children. And then giving back to society as we prepare for looking at what we leave behind. So, that’s one way to look at it, but it’s kind of a trajectory that doesn’t really change or have an ebb and flow to it.
DAN: So it’s like it has common markers, but doesn’t account for the unexpected.
LORI: Exactly. So, then you look more toward identity development theorists and one of those people is James Marcia. First he talked about the stages that we go through as well. Going one route, which is identity foreclosure, which is this is the way it’s always been. My father was a doctor, it's expected I will be a doctor. I'll take on the family business, or our family practices this religion, and of course, that's the religion I will practice, with no exploration. Then he talked about others who take a completely different path, and that would be a diffused path. So, they just say, "You know what, I'm not going to deal with it. I don't want to know who I am," and they kind of wander a little bit, trying to grasp onto who they are.
And so, then he talks about two areas, one is an area that is really taking time to explore, and that's called moratorium, and the other is an area where he looks at coming to an achieved status. So, "I've done this discovery, I've asked some important questions, I've had these experiences, and as he followed the population, and looked at how people change over time, he focused on those two stages, the moratorium and the achievement, and he saw a pattern where about every 10 to 12 years, people would go through natural transformations.
They would question choices that they made, they might have things happen in their life that caused them to reconsider who they are, reconsider their values, and he called that the MAMA cycle, so that's going through this stage of crisis, the moratorium, and then achievement, and then again, something else could spark that moratorium, and then achievement. So that is considered to be a normal cycle through life.
DAN: When I think of movies, for example. There’s often a moment when the hero has some major realization that he or she needs to change. You're saying that it's more gradual, or it isn't that big lightning strikes type of moment that happens …
LORI: Sometimes it can be, 'cause sometimes life comes at you like a big lightning strike and then you’ve got to figure out a way to redefine yourself. We kind of have this perception that when it comes to who we are, there is only one way that we're supposed to be, and it's our job to figure that out. That's really not true. We're much more malleable than that both by choice and by sometimes not choice.
DAN: Sometimes people seem to accept really quickly. What makes them different?
LORI: Well, I think it depends on who you ask, 'cause there's a lot of concepts out there. So you think about what is the secret to resilience, and we've tried to figure that out and study that. A part of that is looking at a growth mindset versus a fixed mindset, which is where Carol Dweck's work has come in, so looking at being able to see other routes and alternatives so that this is an opportunity rather than a barrier.
Angela Duckworth has looked at the components of grit, and what is it about grit and how can we cultivate grit, which we can. We can actually grow grit, and that's important in resilience, and then under …
DAN: As opposed to grits, you grow grit.
LORI: Exactly, yeah. Grits are harder, I think.
DAN: Just clarifying. Okay.
LORI: And some of it is personality. We have different personalities that influence our rigidity, right, how flexible we are and willing to change. And so, I think that flexibility is something that we are going to have to become comfortable with.
DAN: What if that's not our typical nature? We're a little less flexible than some, then what?
LORI: Then I think it's baby steps, because it's all malleable. Just because you may be less flexible than someone next to you doesn't mean you can't work on your flexibility. Redefining ourselves isn’t one act. It’s a progressive act. What we know about the brain is the more that you do something, the clearer the path is. So the brain's comfortable with that. And we can coach the brain to change, or to open up a little bit. It's just like when you think of physical flexibility, maybe you can't touch your toes yet. And so, I think adding that statement to the end … yet.
DAN: And then you don't have to become a yoga instructor, you just work on touching your toes.
LORI: That's right. That's right, unless you want to become a yoga instructor, and then you can, right? But, it might take you a little longer to get there, but ultimately knowing that you have the ability, the efficacy to be able to achieve those goals. Not just, "What do I need to work on to improve?" But also, "How can I use what I have to get where I want to be?" And begin to recognize that, and a lot of that is self-reflection, right, doing some of the hard work of getting to know yourself, and then figuring out how to put that to work.
When we look at the most successful people, honestly no one does it alone. You must reach out to others to support you in one way or another. I think part of why we have such a hard time, especially as Americans, enlisting the support of others is because we are taught one of our values is to be very independent, and so we raise our children independently – stand on your own two feet, rely on no one but yourself We send a lot of these messages that make it harder for us to reach out, because we feel weak.
People like to help people, people like to be helpful, so if you rob them of that opportunity, you're actually being quite rude. By saying, "No," to help, sometimes you then discourage people from helping others, and sometimes people really need the help. So you have to look at it from a couple of different angles, and not as a weakness.
DAN: So, if someone comes to you, going through a big change, where do you usually begin?
LORI: I usually begin with just listening. You know, it’s not about my advice, it’s not about doing it the way that I would do it. So, I think that’s first, is being able to just kind of offer that ear. And then normalizing. I think it's important in society that we understand what is normal, that you will question some commitments that you've made. You will question some decisions that you've made, and that's okay. We have to recognize that as normal so we don't feel guilty about the ugly emotions that we have sometimes.
Transformation isn’t a one-time thing. As Dr. Perez explained, developmental theorists have determined that we cycle through change throughout our lives. It’s easier for some people – based on their personality and mindset - but the rest of us can train our brains to be more flexible. We can help each other by listening and letting others know it’s ok to ask for support.
With that background, let’s return to Robin’s story. Did she seek support from others? Have there been dark days? What are she and Corey doing now?
DAN: I think the average person would expect you to go, "No, I don't want to do this," at some point and then have to struggle with that or fight, but it sounds like you just always said, "I'm in the moment, I'm doing it, and this is the way it's gonna be".
ROBIN: Yeah. Has it been hard? Hell yeah. Are there times I'm extremely frustrated? Absolutely.
At its worst, one night, everything was going haywire, I always recall there being this prayer card that somebody had sent us and it was atop her dresser in her room, and I remember looking at this card and saying to Christ, the picture in this card, "I am so mad at you right now," and that's all I said. "I'm so mad." And that was it. . I just moved on, I said what I had to say and I went back to doing what I was doing, which was trying to get Corey not to choke.
DAN: What happened to your relationships? Parents, your siblings, friends, how did this affect those relationships?
ROBIN: When I look back, I really didn't have any friends at that time. Maybe one, down the street. But nowhere near the network of friends that I have now, and that was part of my growth.
And family, we just went about our business, we had family functions, Corey was always included. And there were certain accommodations we'd have to be aware of, but we just went about our business.
It just was an evolution. It was constantly adapting to what was happening at the time, and always accepting and looking for the silver lining.
So through all of this of course I've changed, I've learned I can be pretty strong.
DAN: It sounds like it.
ROBIN: I can do this. And then I found my footing somewhere. I don't even know, it was meeting friends here on campus, it was allowing myself to say, "I need to go out and I need to have some friends and I need to step away from this and be responsible for only myself".
So I agreed to join a running group with my good friends Robin and Becca. The coach, Susan Noble, approached Corey and said, "How would you like to start running?" And of course Corey was all over it, and I kid you not, immediately told me she needed a water bottle, running pants and running shoes.
Then Susan said, "I hope you don't mind, but I've contacted this organization called Athletes Serving Athletes," so then I contacted ASA in return and did an application and Corey was accepted into the program. She and I both did our first race in June 2015.
DAN: To make that happen, these are athletes, runners who are pushing, I'm picturing like it's a three-wheeled type of-
ROBIN: An adaptive jogger.
DAN: Jogger. And they're running a marathon.
ROBIN: That's one that they do. They run 5ks, 10ks, 5-milers, 10-milers, half and full marathons.
At this point in Robin’s story, it seemed appropriate to bring in another voice. Because Robin’s story isn’t just about her life. It’s about her daughter’s too.
DAN: Welcome Corey.
Corey: Hi, Mr. Dan.
DAN: I’m glad that you’re here.
Corey: Me too.
DAN: Excellent. Do you want to just introduce yourself?
Corey: My name is Corey.
DAN: Now I want to hear a little bit about your running.
DAN: So, what’s it feel like to be in a race?
DAN: Big thumbs up. Awesome.
ROBIN: What do you tell me that you love the most about …
Corey: The cheering.
ROBIN: The cheering? What’s the cheering?
Corey: Go Corey!
ROBIN: Go Corey.
ROBIN: For me to see her wheelchair off to the side, she's in this adaptive piece of equipment, she has these people around her that I don't really know, some of them I've just met, and they're just laughing and conversing and I'm not there deciphering what she is saying. They're figuring it out, and she usually will look for me and she will say, "Mom, this is beautiful," and for her to have, it's just acceptance and the part of being in this fabulous group of people, it is beautiful and it's overwhelming, and I hope she always feels that way about it.
DAN: When you compare yourself to who you were to who you’ve become, what’s different?
ROBIN: I used to say to people, I didn't have a choice and then I reached a point where I said I did have a choice. I had a choice completely in everything. I had a choice whether to put her in an institution. I had a choice whether to look at this negatively or positively. I did have a choice. And I made the right choice.
DAN: How would you say, if you would, that you redefined yourself?
ROBIN: The only way I know to answer that is to say I never defined myself prior to that. I guess I didn’t feel like I had an identity. So redefine – I don’t think I can put that into words. But I know how I’ve defined myself.
DAN: So, tell me that.
ROBIN: I've defined myself as being Corey's best advocate I can be and always making sure that she has everything she needs in life. And first and foremost to be happy.
DAN: And to be a great mom.
ROBIN: And to be a great mom.
DAN: Which you are clearly.
ROBIN: Well, thank you. I don't ... Yeah, I am.
DAN: There you go. Own it.
Even when it’s caused by a lightning bolt experience, redefining ourselves is a choice. The change we decide upon happens over time – we build on it, alter it and sometimes change course altogether. That flexibility is important and we can cultivate our brain’s ability to stretch and be strong. And although so much of this requires work on our own, we don’t have to make big changes by ourselves. There are people – our friends, family, teachers, coaches, advisors, sometimes even strangers – who can help us reach the finish line.
And speaking of finish lines, it seems only right to cross this one with Corey.
DAN: What’s your relationship with your mom like?
Corey: Well …
ROBIN: Hmm? That’s okay. What’s it like?
ROBIN: Good? That’s it?
DAN: Good. Big thumbs up.
Corey: Mmm hmm.
DAN: Well, since mom is here, anything you want to say to her?
Corey: I love you, mom.
ROBIN: I love you too.
DAN: Ok. Now you’re making me get choked up, Corey. That’s not fair.
So, Corey, you’ve accomplished a lot. What’s next for you?
Corey: More running!
DAN: More running.
ROBIN: Where did you tell me you want to run next?
DAN: Paris? Oh, can I come.
ROBIN: Do you know how to speak French?
Corey: Ooo-la-la. Oi, oi.
[Music and Credits]
Redefine U is a production of Anne Arundel Community College.
Our executive producer is Allison Baumbusch.
Our producer is Jeremiah Prevatte and our writer, Amy Carr Willard.
Others who helped with this podcast include Angie Hamlet, Alicia Renehan, and Ben Pierce.
Special thanks to Robin and Corey Ward and Dr. Lori Perez of AACC.
Find show notes, how to subscribe and other extras on our website: www.aacc.edu/podcast.
I’m your host, Dan Baum. Thanks for listening.
Dan: Well, is there anything else you would like to share or say?
Corey: No. No.
Dan: No? Ok.
Corey: That’s a wrap!