096 – Hamilton and Broadway Star Miguel Cervantes Recounts the Passing of Daughter, Adelaide, Due to Epilepsy & Infantile Spasms

Transcript:

Dad to Dad 96 – Hamilton and Broadway Star Miguel Cervantes Recounts the Passing of Daughter, Adelaide, Due to Epilepsy & Infantile Spasms

Miguel Cervantes: I am making my Broadway debut as Alexander Hamilton. At the same time, we were finding out that my daughter’s in really bad shape. So you can understand, I call it a lot of times where sort of I’m holding onto a comment, one hand in a parachute and the other two sort of forces. Going against each other. And that’s sort of how we came to Chicago, but that’s how my Hamilton life began was under unbelievable amount of stress for my family. And, and, uh, the excitement of doing this amazing job.

Tom Couch: That’s Miguel Servantez David Hirsch’s guest on this special father’s network, dad to dad podcast. Miguel played the lead role for the entire 171 week Chicago run of Hamilton, an American musical.

Miguel, his wife, Kelly son, Jackson, and newborn Adelaide moved to Chicago. So Miguel could become Alexander Hamilton, Alexander Hamilton. But as Miguel would head to work, there was trouble at home daughter. Adelaide was having seizures related to a severe form of pediatric epilepsy. Tragically, Adelaide passed away at age three. Kelly has a blog and a podcast.

Miguel Cervantes: It’s important to me that people saw her the way that we saw her as this feisty opinionated little wonder woman who was strong as hell and, and fought every day of her life gal has the role of a lifetime. My job requires me to cry. I’m almost at a thousand performances now in those moments where sadness. Takes over. I actually think of my daughter and how hard she fights and I think of my son.

Tom Couch: So let’s listen now to the Special Fathers Network, dad to dad podcast interview as David Hirsch talks to Miguel Cervantes.

David Hirsch: I’m thrilled to be talking today with Miguel Cervantes currently of Chicago, Illinois. Who’s the father of two, and who’s had a celebrated acting career on TV and movies and on Broadway. And most recently was the lead in the play Hamilton, an American musical here in Chicago. Miguel, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Miguel Cervantes: Absolutely. Thanks so much for having me.

David Hirsch: You and your wife, Kelly had been married for 10 years now. The product parents of son Jackson, seven and daughter Adelaide, who was diagnosed with epilepsy as well as infantile spasms and tragically passed away last fall at age three and a half. Let’s start with some background.

Where did you grow up? Tell me something about your family.

Miguel Cervantes: Uh, you know, I grew up in Dallas, Texas. I was the middle son of three boys. Uh, father Marcos, mother, Mary older brother, Marco’s Miguel, me and the, uh, my younger brother Martin. So we were called the M and M’s growing up. My father was third generation Mexican American.

His grandparents came over from Mexico, his ranchers. Um, my mom was, you know, an Anglo lady from Texas and so, or myself at TexMex by heritage. That’s sort of the official term. And yeah, I grew up in Dallas, my father’s family, they said about this family was around the Dallas area, my whole life. And, uh, sorta was introduced to theater as a, as a, uh, junior high, like around 11 or 12 years old, whatever sixth grade is.

And that’s where I started acting and sort of finding out what. The theater was about singing and dancing and those kinds of things. It was never part of my life as a young young kid. My parents didn’t, my dad was in a band. I think I just sort of fell into the idea that theater was something that I enjoyed and that I was good at and sort of that’s how my career quote unquote began and the acting bays and, um, went on to, uh, school, um, after high school and, you know, New York after that.

And few years later here we are Hamilton. Uh, Alexander Hamilton.

David Hirsch: That’s amazing. I’d like to go back a little bit though. What, what does your dad do for a living?

Miguel Cervantes: Uh, my father was a kind of a person that got up and put on a tie and shaved his face and went to some office somewhere, looking back. It was a sub big insurance company in Dallas and he was in the human resources or payroll department or something.

We were always talking about payroll and he was also in the Marine reserves, never went on active duty. But he’s had something to do with the payroll department when we’d go to the, to the base, we would watch him and do his office work there at the base. Okay. After we were growing up a little bit later, uh, he lost that job or that job change or some sort of a situation happened.

And then he kind of found himself doing this, that, and the other thing until he retired finally, um, later, later on in life.

David Hirsch: Okay. And out of curiosity, how would you describe your relationship with your dad?

Miguel Cervantes: My dad taught me stuff. I remember him teaching us and mostly in a very general way, nothing really specific, like what he taught me, how to shave, or he taught me how to do this.

You know, I remember, you know, the biggest memory I have is him running behind me when, on this old bicycle. And I would just say, I just have this memory of him holding the back of the bicycle and just running, running, running, running behind me. And then I said, okay, Finally as a dad, I did it. I did, I did.

I was riding by myself. He said, no, no, no, you were riding by yourself the whole time. I was just running next to you. And I said, Oh, um, that was kind of the way that we learn things. Like he was saying, well, just do it, go do it. And I find myself doing that with my son. You know, it’s like, well, you just have to do it, do it.

And I’ll help you if you need my help. He was always super proud what I did on stage and never, there was never any part of. Him or my mom or my family at all, that was questioning whatever was that I was doing as far as the theater and all, all that stuff. But he was, he was our coach. He was the coach. He coached our soccer team.

He coached the track team. He was always there. He, you know, he was the parent in our life that took us to the things, you know, as far as the sports would go, once theater came along and then my mom took over, but he was there with us. Um, every, every baseball game, every track meet every single time we were out on any kind of field or anything, he was there offering instruction, yelling.

I find myself yelling at my son now and I’m like, God, I sound like father later on in my high school days, there was a lot of trouble, you know, chameleon trouble that comes along. Most, a lot of folks have that kind of stuff going on in their life. Even through all of that, I learned an amazing sense of, um, Self-sufficiency I did a lot of things on my own and figured out how to do things on my own.

And I think I learned that from them, the way that he taught me, the way that he loved me, the way that he sort of taught us the three of us boys to sort of keep moving forward. Uh, I tell myself all the time right now, I say, why are you crying? And I said, he’s. I was like, well, are you, are you sad? No. Are you angry?

No. Are you hurt? Tell me, are you hurt where your body’s hurting? I said, well, okay, listen. All of those things are great, great reasons to cry because I asked you to put your toys away is not one of them. I remember. My dad’s speaking to me like that, you know, and he would, he would, he would cry. He would cry on a, on a, if you looked at him funny, if you sneeze the wrong way.

And I got that from him as well. And so I, but when I speak to my son, like that way in a very compassionate, but you know, no nonsense kind of way. And that’s what, that’s where, that’s where I came from.

David Hirsch: Yeah. Well, thanks for sharing. It sounds like he had an important presence. That’s what I hear you saying.

Yeah. He was there for you right. In so many different ways and it wasn’t so much what he said, but how he did things and, uh, you know, you’re checking yourself every once in a while and saying, Oh, I sound like my dad, or I’m doing the same things that my dad did with me, which is a great testimony to the parenting role that he had.

So

Miguel Cervantes: yeah, absolutely.

David Hirsch: Out of curiosity, was there anybody else that played an important role while you were growing

Miguel Cervantes: up? You know, I had a lot of mentors once I started into the theater older guys. And like I was saying earlier that my family life kind of fractured a little bit later on in my teen teenage years.

So I kind of looked to other people, found myself being taught by directors and choreographers and people who would say, you know, Hey, how are you doing? That continued into my college years, where I met him, our theater department in Emerson college in Boston, and an a fellow named Leo, Nicole. He was a little Greek man about five foot three, and he sort of took me under, under his wing and knew my family background, everything was going on at my house and taught me not only in the theater world, like sort of how to be.

Respectful. And, you know, I talk to kids a lot about, you know, Hey, here’s how you can be successful in theatrical world. I said, you know, talent is one thing. Timing is another thing. The other thing is making sure that people think you’re a good person. And, uh, you’re right. Reputation is one of the most important things you can have with you.

And Leo taught me that he, he taught me to be no matter how good you are or how talented you are, no matter all of these things like people have to, like you. And I’ll I’ll remember that. And he would sit me down and say like, what are you doing? Why are you doing that? And those kinds of conversations. And that says valuable as any singing lesson or acting lesson you can ever have.

And so I remember that for the rest of my life, and I owe that to him. In addition to the lessons I learned from my father as well.

David Hirsch: Yeah, well, that’s fabulous. Uh, so if I can paraphrase what you’ve said to, uh, instructor of the theater department, um, fellow Leo, Nicole,

Miguel Cervantes: Nicole,

David Hirsch: really emphasize the importance of being a good person, right.

A likable person, right? Because you could be the most talented or smartest person in the world, but you know, if you don’t have those social skills, you know, it’s going to be really hard to get ahead. And what an important lesson to learn at an early age.

Miguel Cervantes: I mean, listen, unfortunately, there are some people who are not good people that get ahead, but yeah, listen, there’s always exceptions, right?

David Hirsch: That’s exactly. There’s a lot of outliers out there. So from what I remember, um, you went to high school magnet school in Dallas, uh, Emerson university took a BFA in musical theater, and I’m wondering, um, where did your career take you?

Miguel Cervantes: You know, I think. Another thing that I say to the young people of the world who want to do this thing for a living is, um, no one’s path towards success is going to be the same.

I ended up in New York, right after college with lots and lots of opportunities that I let fall. Off the cliff. I let him go right down the drain cause I wasn’t focused. And so as a 22, 21 year old kid in New York, I was not prepared. I was not ready. I floundered and lost my way working in restaurants and stuff.

And a year later after I got there, it was September 11th. You know, this sort of city was a different place after that. I bailed out in New York city. I couldn’t take it anymore. So I’m back to Dallas, spend time with my family and realize that that probably wasn’t the best thing for me to do either. You know, now it’s 20, 24, 25 and found myself back in Boston, uh, where I think that’s where my career, if you want to.

Call it a career beginner there. Yeah. And I met, I met some people at a theater company and did a show there called bat boy. And that was a huge success there in Boston. And as the theater business goes, this show can lead to a, a relationship with this person. If this person likes you, then they can work you into the next thing.

And then they can go to the next thing. And, you know, a couple of things later, I find myself cast on the first national Broadway tour of a show called the 25th annual Putnam County spelling bee. And that’s kind of where. Things started to go, uh, and felt like I was beginning my work as a, as an actor in New York city.

Um, so you know, it was 28, 29, maybe, you know, and I can flash forward to my first day at Hamilton in Chicago where, you know, it’s the biggest thing I’ve ever done in my life. And I’m standing on stage with a 20 year old. Doing the biggest thing in his life. And I was like, wait, wait a minute. So know that’s, that’s a Testament to how everyone’s journey will be different and the opportunities will come at different times.

And so no one can map out how this works. And so that’s where my began is about, about 29 years old. I finally found. The path that I should be on and put in the real work. And then few Broadway shows later and a whole lot of blood, sweat, and tears in the middle. Uh, I find, I found myself, uh, Alexander Hamilton and one of the biggest shows in the world.

So it’s, it’s pretty, very long, long journey to get here, but I’m so glad that it happened. You know, it wouldn’t, we knows through all the trouble and trials that came to get here. If I could have gotten here any other way. So,

David Hirsch: well, thank you for the brief flyover. Um, I. I do want to go back a little bit because you know, your bio is a really impressive one from a theatrical standpoint, I’m American idiot, 2010, if then 2014, before you went into this role that you’re currently making reference to.

And I also noticed that you did some work in TV. And, uh, we’ve been sheltered in place and, uh, we’ve been binge-watching, I think we’re a season five. Yeah. And you know, I’m way into this, uh, this James Slater, uh, situation. And I realized that you had a role in blacklist, which I was unaware of.

Miguel Cervantes: I did.

David Hirsch: And, uh, I think it was, I went and did my homework, uh, season two, episode three, dr.

James Covington, number 89. That’s it. And you played a role as. Crystal ball. Royez

Miguel Cervantes: Christa ball Rojas, Rojas.

David Hirsch: And describe for me what was,

Miguel Cervantes: well, you know, it’s, it’s funny, those, those experiences I’ve had Mario probably six or eight of those kinds of experiences where you go for one day, you know, you, you get your little trailer and it’s a little closet and you go on there and you have your little lines and.

Um, you know, you’re just ushered onto the set and Paul Reubens, you know, Peewee was the guy with me. And so we kind of chatted and talked a little bit and it was fun to meet him and be part of those, you know, that I I’m mostly a theater person I’ve had, you know, just in. Things like this, where, you know, it’s a generous to say I had a role.

Um, it is more, you know, they called us the date of the day people that came in for a, for a couple of, couple of lines here and there. And, um, but it was fun. I mean, it’s, you know, that was really kind of the, one of the bigger ones that I’ve ever done. Um, and it was super fun and it’s not, it’s such a weird thing to do because unlike theater, where you get immediate gratification, you know, kind of what it looks like, you know, what it feels like, you know, the audience is right there, there, you know, you do it a few times and then the director will come in and say, okay, now, duh, duh.

And you know, it was fun. And then after that, everyone’s smiling and laughing and saying, hello, and then off you go, and you know, a couple of weeks later, Aunts and uncles call you, let your, I saw you on TV. I saw you on TV. And so being on set like that, it just to sort of see the other side of it. Um, it’s something that I’d love to do more of if I can, but I don’t get to choose those kinds of things.

So Hamilton will be all right.

David Hirsch: Okay. Well, very cool. Thanks for sharing. And, uh, like I said, I’ve been binge-watching blacklist and the fact that I’ve met somebody that was involved in one.

Yeah.

Miguel Cervantes: I should, I got to go back and watch that episode.

David Hirsch: So you have not watched all the episodes then?

Miguel Cervantes: No, no, no. I’ve never, never got, never got into the bow. Got plenty of time now. Maybe we’ll jump into it.

David Hirsch: Okay. Well, thanks for sharing. So switching gears a little bit, um, out of curiosity, how did you and Kelly meet?

Miguel Cervantes: Uh, I was doing a show Kelly and I, um, I’m in New York city. I was doing a show with a friend of mine or this guy that I met and we became friends and he said, Hey, you should meet my roommate. And I was like, yeah, she looks, she had her picture in her, in his bag and said, Oh yeah, sure. She looks good looking gal.

And, uh, he sort of worked straight at a meeting and, uh, you know, very, very sort of underhanded, conniving way. He got us into being the end of the same room. We hit it off and, um, No three years after that day we got married. Um, that’s our story, you know, it was pretty whirlwind, uh, immediate kind of thing, and yeah.

You know, kind of retell it those times, how it all goes. But here we are 13 years later with a whole lot of life under our belts and, uh, Switzerland, she’s got she’s. Uh, she’s a good, really good lady out

David Hirsch: of curiosity. Did Kelly work before you guys started your family?

Miguel Cervantes: Yeah, she was the actual, um, she was.

An actress for the majority of the time that we were together. And then I guess, around where I think we were, yeah, we were married and she was still doing the acting thing for awhile. Yeah. And then, uh, we. Got to a point where, you know, I had been on Broadway by then. And so I was, it’s some things under my belt.

I was going a little better of ours, asked if she would come work with her in the restaurant industry, as that sort of began her career in this restaurant biz. And she, um, you know, the years later became the head of the events department and. I called her title, a sugar mama, because she was that she supported our family and it was, you know, because of her that we could afford a house.

And, you know, the acting bays is exciting when you have a job, but it can be fleeting, which was great for me because I was just enjoying working on the yard and, and, uh, keeping the house relatively clean and making dinner and stuff. So I loved it. And that was where, sort of our, our experience up until Hamilton came along when.

All of the factors of our life, cause to need to quit her job and that her working life. And then I know that’s even when my son was born, she was still working and I was sort of the caretaker at home for the most part, which is great also. And that changed when my daughter was born.

David Hirsch: what’s a segue to a special needs. And I’m sort of curious to know before Adelaide was born, did you or Kelly have any experience in the special needs community?

Miguel Cervantes: No. None at all. You know, I think like most people, you know, you know, some people with some sort of a special needs family member or a child and.

In retrospect, thinking about our life and thinking about folks that don’t know about it, um, when you see someone in a wheelchair or some sort of situation like that, cross your path, you know, your, your thought process about them is as much as you can see of it, you know, you see them go from this place to that place.

And whether it’s however, they navigate that. And once the you’re out of your field of vision or your area, then you don’t think about it anymore. And you never think about. How they got there and then where they went after, you know, and I think that’s how we were. That’s how I was. I know, you know, I, you know, you see something on TV or you see something the st.

Jude commercial and you think, wow, that’s, that’s so terrible and moving and you know, what are we having for dinner? Um, and I think that’s, that’s. I feel like that was as much as experience as anyone else.

David Hirsch: Okay. So, uh, going back in time, uh, what was your first reaction to the diagnosis and how did that feel?

Miguel Cervantes: Um, her birth was my son, uh, was in, she was in labor for about 18 hours or something like that. It was long drawn out. And so we expected something like that with Adelaide and it happened like a rocket. She started having contractions and I was like, uh, Like a bat out of hell, getting to the hospital. And by the time I had parked the car and got up to the thing, they were rolling in the table to get her out of there.

Wow. Yeah, it was, it was less than, I think, 20 minutes from drop off to go time. Adelaide came out like a rocket and immediately the first day something was not right, but only in sense. So in terms of her sort of responses were a little slow, but not alarmingly. So just a little bit. And she wasn’t eating enough and she was a little floppy.

They called her, but I thought, you know, all babies are sloppy, so no, no big deal. And, you know, We figured out she wasn’t eating enough and she wasn’t sucking, uh, breast milk enough. So we kind of worked around all of these problems and the doctor said, okay, great. She’s that she’s gaining weight back. She loses a lot, lost too much weight.

And, uh, in those first couple of a week or so two weeks, she didn’t cry a whole lot. Like, you know, you have a newborn baby or not expecting to sleep. And we would sleep through the night, which was so weird. And we thought this is great, but maybe not, maybe it’s not great. And then we come to find out that she was a little weaker than she should have been.

And she was losing too much weight, got some food into her, got some calories into her and her eyes opened a little bit. And we were like, okay, great. You know, it’s a, you know, just a fleeting fleeting problem for a second. And then. As her life was going on. Um, she was missing milestones. Like she wasn’t rolling over.

She wasn’t holding her head up enough and the doctor was a little worried. And so about three months old, she had her checkup and they said, listen, you need to go see a neurologist. And we thought, okay, you know, that’s cool. And so you, then you go down the Google hole and start Googling all of her symptoms, you know, floppy arms and floppy head.

And it’s terrifying. We, we had to wait two months to get, to see our neurologist and, uh, the actual appointment. Um, that was the first time that they, the sort of word epilepsy sort of entered into our, our sort of thinking. They took an EEG of her head and they called her hypotonic, which is really floppy that doesn’t doesn’t engage her muscles enough.

And, um, did an EEG and they said there’s an epileptiform activity. So epilepsy generalized epilepsy, and that’s sort of where it started. And, you know, you begin to think of all of the, you go down another Google hole and those types of things can sometimes be outgrown. They can sometimes go away on their own.

And so that was our, that was how it started. We were not overly scared. We were very nervous about. But, you know, epilepsy, we, you hear about that at that time, no doctor was saying anything really dire. It was just something that was very concerning and we need to sort of dig in and then sort of move forward through the next few months.

And, uh, some seizures started happening and at nine months old, I hear the term infantile spasms. And that is one of the most Charlie types of epilepsy that there is. And that was when we began to understand that our situation was pretty, pretty serious. And, uh, going down that and Google hole is when is when it starts getting really terrible, terrifying.

And, you know, and that’s sort of where the, the bulk of, of this journey started, you know, or curling tool to be, you know, where it started to where it ended. That’s when we knew how serious it was. Yeah. What I

David Hirsch: remember was the timing of this seemed to be, uh, like the. Best of times, worst of times, right?

When this diagnosis was taking place, the one that you just described, but your career was going in just the opposite direction. From what I remember

Miguel Cervantes: reflect on that. Yeah. So the, like I was saying before Kelly’s job, she got a new job and was going to begin working at a, at a new restaurant as the head of their department that was happening.

I had just started auditioning for Hamilton that may LA was born in October. And that may was when my Hamilton auditions began and in April is when the seizures started. So you can imagine that there’s a lot of things happening. And in fact, my third and biggest audition ever was on a Thursday or Wednesday.

Um, and I had to leave the hospital because my daughter was there. Getting on number of battery of tests to try to figure out what was going on. And so I had to leave her and my wife at the hospital to go to do this audition. So, you know, the next week I get the job as Hamilton and as rehearsals are starting.

And we’re getting ready to move to Chicago. She starts having really terrible seizures and we find out that she has infantile spasms. So I am making my Broadway debut as Alexander Hamilton. At the same time, we were finding out that my daughters. In really bad shape. So you can understand, I call it a lot of times.

Uh, we’re sort of, I’m holding onto a comet with one hand and a parachute in the other, um, and you know, the two sort of forces going against each other. And that’s sort of how we came to Chicago. That’s how my Hamilton life began was under unbelievable amount of stress for my family and Anna, the excitement of doing this amazing job, uh, I don’t think there’s any way to really describe how, how we feel, how we could feel at that time, you know, the changes in our life.

We’re already going to be crazy. So add that into the mix and, you know, you get, you get the surmounted story.

David Hirsch: Well, it sounds like a, to use another metaphor in addition to the Google hole, which you made reference to a couple of times and the comment and parachute, um, it sounds like it was a roller coaster, right?

With these extraordinary highs. No, the like opportunity of a lifetime from a career standpoint and these super scary lows, right where the bottom seems to be falling out. And you’re just in freefall. And somehow, you know, you guys have navigated this crazy situation and I’m able to hold it together somehow some way.

Um, but I’m, I’m wondering. When you first learned about these in Patel spasms, which is sort of a, a very severe type of epilepsy, what was going through your mind? What were you and Kelly talking about? Um, do you remember what that was like? Uh,

Miguel Cervantes: yeah. You know, I think, you know, if you speak to any, a parent about, um, you know, raising a child or, or what the.

What, what your sort of, what goes through your mind when you have a kid? Um, you know, you’ve moved very well about how, what your expectations are and what your sort of hopes and dreams are. And we have a little girl and we’re super excited about all the things that go along with that, and then something’s not quite right.

Okay. And so you sort of see trying to really understand how that will affect those expectations and how you affect those dreams. And you always remain hopeful. You remain hopeful, you remain hopeful that science will fix it. Doctors will fix it. You know, if something will go the other way, and then you find out like some of us do that, there is also the possibility that yeah, they will not mix it and it will not be okay.

And it will not turn out. All right. And that’s where we were. Okay. I called it. I coined my phrase are our cone of possibility. Right? With, you know, just epilepsy, regular seizures, those kinds of things, your cone of possibility, you know, where the leading edge is normal life and regular old, regular old people.

Um, the, the other edge is the worst. Our cone of possibility. Most people pretty much live on the one side of the cone. Um, we started being able to see that we could re actually very much be over on that side of the cone also. And that’s how we came. I think we came to Chicago with the diagnosis, understanding that we had to be prepared for.

The worst and yet not focus on that as being the only outcome, we were hopeful that we were not going to be in that situation and, you know, had to, had to sort of live in the place of, of just one day at a time to sort of see what our life is going to be like. And that’s all you can do. So that’s all I remember laying in bed and hearing her sort of cry and make these sounds that weren’t, they weren’t right.

They weren’t. Regular kid sounds as a, you know, nine month, 10, 11 month old baby and Kelly. And I would lay there and just sort of listen and kind of wonder how it is that we got where we were, how it is that we were there, why we were there, you know, you go into the why, why us, why me? Why, why, why are we having to do this?

This happens to other people. This happens to both people who. Cross your path on the street? Not to us though, you know, not to me, same thing with Hamilton, right? That happened somebody else too, that happens to another person that’s like winning the lottery. Um, you know, that doesn’t happen to just regular old guy like me.

The luck of the draw, you know, bad luck or good luck. It’s still just a luck of the draw. And we, we, we drew a couple of, couple of doozies. Um, we spoke about earlier about the poem about, you know, welcome to Holland where, you know, you expect one thing and you end up somewhere else or you end up with something different Kelly.

And I talk about that metaphor. It’s weird because. If you actually plan to go to Italy and you end up in Holland, Holland’s kind of beautiful. It’s kind of a nice place to visit. Um, if our situation is not beautiful, it’s not nice. It’s not nice. There was nothing nice about what we had to do, but the other side of that coin is you don’t get a choice.

Those are the things that you actually don’t get to choose. You don’t get to get a redo or just take it back. So we laid in bed and thought about what our life would look like, how we would deal with this. And regret and anger and tears and fear, and it’s all going to happen, but it’s not very useful in those times.

There’s time for it. But at that time we were like, let’s just keep going. We gotta see what happens. And that’s what we did.

David Hirsch: Yeah. Well, I think it speaks to the resilience that the two of you have that your family has. It’s not lost on me that, uh, you had a lot of changes taking place. Uh career-wise for both of you, you’ve uprooted your family or young family and moved to a new city.

I’m assuming that you didn’t have a lot of, uh, connectivity to Chicago. And, uh, one of these things would be. Dramatic enough for most families, but to have all these things changing at the same time, it’s like, you don’t have your feet underneath you. Right. You’re just sort of like finding your way in the dark almost, you know, it sounds like there was some pretty dark days for that matter, even though there was a lot of things to be celebrating that must’ve been a pretty dark time in your lives early on.

Miguel Cervantes: Yeah. So pretty much every appointment, every milestone, every, every passing month and year. Got worse and worse. We never found out what happened. We never found out why it happened. We never found out what the genetic cause was. Epilepsy one Oh one here. Epilepsy is not a disease. Epilepsy is not a diagnosis.

Epilepsy is a symptom. Epilepsy is a seizure disorder caused by filling the blank, genetic malformation, tumor injury, chemical imbalance feeling, you know, there’s any, any number of reasons why seizures happen? And in this sort of world, the doctors will say, we have to stop the seizures. Even if we don’t know why they’re happening to stop the seizures.

Cause there’s no development. No, no life can be lived if there are seizures all the time. So if you don’t know the cause, well then you just find the symptom. So that’s what we did. And we never found a cause the symptoms would subside momentarily. I think our longest stretch was maybe three months without a seizure.

And every passing day would lead to more heartbreak until the realization years and years later, three years later that we were not going to get out of it. The cone had gone towards the bottom edge.

there’s no world in which this is ever worth it. If you could choose to not have a suffering child, family member, you, I feel like most of us would choose to not here. And so. I could go back and give it all away. Give up Hamilton, give up everything to have healthy daughter. I would do it right. And then it’s hard in a heartbeat.

I don’t care. I don’t care. The good that’s happening. I don’t care. The good that can be done. I don’t care about any of it, but you know, we don’t get to choose those things. So the Axelrod’s to Susan and David Axelrod are, are the founding members of cure citizens United for research and epilepsy. And they just happen to be located in Chicago.

So when we got here, my wife actually had also happened to work with them in her restaurant business, as their big fundraiser she used to do with the big parties and fundraisers, and they would have one in New York every other year. And so she immediately called those people and we became very close very quickly as their daughter suffered seizures when she was younger and, uh, is still, she lives at the Misericordia house, uh, to this day.

Severely developmentally delayed and it needs constant supervision and care, but is alive. And, and, and so their lives have been forever changed by epilepsy as well. So I came close with, with them and their organization, but David Axelrod, you know, looked at me one day and he said, look, man, I, uh, I’m so sorry to have to meet you.

I’m so sorry to have to know you. I’m so sorry that you are here as part of our club. But we are very happy to have you, you know, you’re like, well, okay. I don’t want to be here either. You know, in the world of having a family member with seizures and terrible, terrible situation like this, clearly it’s not a club anybody wants, but to be able to have a club, to be here, able to have a support system and a network of people is pretty meaningful.

And then to take that one step further with me, Because I was Alexander Hamilton because I had a platform, we were both Kelly and I were both able to redirect a lot of this anger and sadness into a positive outlet. And then that’s what we did with cure. And so if some good comes out of any of this, something good, uh, then it makes it a little less terrible.

It does not make it worth it. Like I said, it does not make it to where I’m like, yeah. You know, we changed the world. Good for us. No, not good for us, but if, if some good can happen, then perhaps it takes, takes a little bit of the edge off of, off of an otherwise really, really terrible situation.

David Hirsch: Yeah. Well, I admire you and Kelly for doing the work that you’ve done in the last few years in the name of cure.

It sounds like at some level it’s been somewhat therapy to be able to redirect some of that energy that anger you were talking about and do a positive direction during Adelaide it’s life. And then here we are in a post-data world, if you will. And I don’t want to focus on the negative, but yeah, just to be real, um, there were the issues that you were just referring to during Adelaide’s life.

And then now it’s sort of like a post Adelaide, and I’m wondering if. You can reflect on what some of the bigger challenges were while she was alive. And then now she’s passed.

Miguel Cervantes: I can’t speak for other parents, fathers. I don’t know what other folks day to day is, would be, but you know, our, our day to day was pretty crappy from any given week to next week.

We finally got full time nursing service in our house, which helped a lot. Where thankfully did not have, I have to worry about financials. We had great insurance and Hamilton gave me the ability to meet it’s something we would just get. So that part of our life was a little easier than I think maybe some folks have it.

I thought consider ourselves very fortunate because of that. Uh, you know, I know that there’s a lot of couples that. All apart because of stuff like this, um, we were able to hold it together because our only stresses were Adelaide related. It wasn’t money, it wasn’t job or time. It was mostly Adelaide. And that being said, you know, I would have to go to the theater, leaving my daughter at home.

More times than I can even remember, uh, seasoning and yelling and crying and, and, you know, my son is on the couch, experiencing it, the nurses in there trying to calm her and my wife is fixing some meds or some dinner or some medical in our, in our medical, uh, makeshift clinic in our house. And that was our life from day to day, sort of.

Begging for a smile or begging for some calmness or begging for something to move to a positive place, some eye contact, we just never got it. So if you were to ask me how different my life is now, it would be hard for me to not to tell you that there is a big part of our life that is better. There is a major part of our life that is easier.

I think losing a child, you know, is the worst, probably one of the worst things that a parent can ever experience. Right. I think that’s pretty, pretty clear if it were to happen and leave or happened to like something happened, like some terrible tragedy, sudden loss of a child seems to me to be unbearable.

What’s pretty unbearable also is the really slow burn of a loss. Right? Like we were losing our child over the course of three and a half years.

David Hirsch: It’s like a death by a thousand cuts.

Miguel Cervantes: Right. Amen. Amen. And, yeah. And at some point in there at about 990 cuts, you’re like, you know what, I think we’re ready for this to be done.

And if that’s where it’s going, then. If there’s a God, they’re like, let’s go and get this done for all of us, but not the least of all for this poor suffering child. And that’s, I think that’s what happened. And that’s where we were. That’s where I was, you know, Kelly and I she’s a different person than me.

She had a different experience than I was. I had to go to work every night. I had to go to the theater. I got to go be Hamilton every night. She didn’t, she was mom caregiver every day of Adelaide’s life. And so that’s a different experience. From my point of view, I was filled with as much grief as I was relief.

And so now here we are, six months later, you feel a lot of emptiness, right? There’s an emptiness of machines and worrying and the constant action of our house, but there was, was very active household. There’s a physical. Loss of being there’s this person who, who was here and is no longer here, the absolute end of hope while, you know, in our city, I think the hope was pretty much squashed.

You never, ever lose hope that there’s something there that there’s something that we’re not seeing. And when that is absolutely gone, then that’s another part of it. And the new family dynamic that we are, we were four. Now we are three. When people say, Hey, how many kids do you have? I alter every time, every time, you know, and that’s the truth that’s gonna, that’s gonna always happen.

And that’s where we are now, specifically where we are now here, you know, April of 2020 in the coronavirus swirled, the COVID-19 carnival. I think it’s even a whole nother set of difficulties. Right? Because moving, we were going to move, we were moving on. Yeah. If you got like you do people move on, you move to the next part of your life.

The next one, however you post Adelaide life. And we were going to move back to New York and have that happen. And instead we are now paused completely on hold until further notice where we get to come back a little bit in time and sit in this place of remembrance and grief and regret and all of the things that are happening, and yet also relief that she is not here to have to add to this terror that some sort of, you know, Virus is going to take hold and just devastate her.

So, yeah, but all that in a bottle and drink it, right? Like that’s, there’s just so many things happening at one time and where that’s, where we are.

David Hirsch: Yeah. Yeah. Well, thank you for being so transparent and authentic. It seems still very raw. That’s my read as you’re reflecting on your situation just six months after your daughter’s tragic death.

So again, I just admire the two of you for what you’ve been able to do, and somehow find some peace and to move forward. And it’s very unfortunate that with the COVID-19 environment, that we’re all in that, you know, you’re sort of stuck, right? Not a bad place to be stuck in Chicago, but you know, you need to move on, right.

Not only psychologically move on, but physically move on and get to a better place. And, uh, I’m hoping that, um, it’s just a very limited amount of time that you’ll be able to get to where you’re going. But the reality is you might not be on a stage and, uh, 2020.

Miguel Cervantes: Yeah. That’s the sort of. A harsh reality of all of, all of our situation is there’s just no world in which I can envision, um, how this ends, how this is how this goes to the way it was.

Yeah. There’s nothing to say. Like you can, we will sit and wait, we’ll sit and hope. And life still happens. Life is still happening and we’ll try to adjust as we can and hope that hopefully, and I feel like I’m the fortunate one that when it’s time to go back, Hamilton will be back some won’t a lot of people won’t.

And so for that, we’re grateful, but. You know, here we sit waiting with everyone else. Um, with a little, you know, a little bit of joy that we could get just to hang out and have wine every day. Um, grief that we’re here without our daughter and anxiety, not knowing what. When this is going to be over. And so we just get the whole, we get all of them, all the, all the emotion, every one of them.

David Hirsch: Well let’s, um, talk about the work that you’ve been doing in the name of cure, which again is citizens United research for epilepsy, which was started by the axle rods here in Chicago. I did a little research and it turns out, and I was stunned by this statistic, that one out of 26 people in the U S will develop epilepsy at some point in their life that a it’s more common, two times more common in children than adults.

And I don’t know that that’s broadly known. So I admire the work that both. You and Kelly had been doing to raise awareness, raise resources, and draw attention to this important aspect of society. Because if you’re not touched by epilepsy, it’s like a lot of things in life, you don’t have an understanding or appreciation and anything we can do to bridge the gap between the epilepsy community and the broader community, I think is really important.

Yeah. Um, more specifically, uh, Kelly as a, what I would refer to as a. Prolific blogger. And, um, where did the name inch stones come from?

Miguel Cervantes: Um, that’s, that’s a term that I actually am trying to remember whether or not she made it up or she heard it. Um, I’m going to give her credit to making it up. Who knows?

Let’s just, let’s just, let’s just say she made it. Okay. But, uh, you talk about milestones, right? You talk about, Oh, you know, we reached this milestone today, walking, talking. Whatever a potty training, like all of those things are that your child milestones, that they’re, you get an email from baby.com saying, Hey, your child should be at this milestone right now.

And we got that with my son and my son was super early for everything. Um, well with Adelaide milestones, we kick them to the curb pretty quickly, um, and develop the idea of inch stones. Right? If today is just a little better than yesterday. Then we’ll take that as a, as a incremental move forward. Like, you know, we’re not, we’re no longer looking for head control.

We’re looking for open eyes, you know what I mean? Like something you would think of never think of in a million years as something that is as an accomplishment, that would be huge for us. And so that is how we lived our lives. And I think. That is something that special needs families. I know all too well, is that incremental change is all you can really hope for from one day to the next where, you know, there are huge things that children can do from one day to the next, in a typical child, they can learn so quickly and something that’s not how it works.

In these situations. So that’s what I can,

David Hirsch: well, thanks for explaining. Cause it wasn’t really obvious to me now it seems crystal clear. So I know that, uh, one of the blogs that I’m. Kelly wrote, uh, back in March. Uh, so a month or so ago was welcome to Holland, which was that a poem that is a, you know, sort of a metaphor for the special needs community.

And it seems like it’s almost to a person when somebody has a child with a diagnosis with special needs or some type of disability, you know, it’s a curious poem and it’s not like it’s the silver bullet. That’s going to put you in a better place, but it does. Give you a point of reference that I think maybe over time, people can relate to, even if you can’t relate to it straight up.

Um, then, um, the thing I was really taken by was the, um, podcast that Kelly has been doing the past year or so

Miguel Cervantes: Kelly Cervantes. And this is seizing life, a weekly podcast produced by citizens United for research in epilepsy cure.

On October 17th, 15, we welcome to Adelaide grace, our beautiful baby girl into the world. She was feisty from the start, but her development was noticeably slower in comparison to her older brother. By the time she was four months old, we were meeting with the neurologist and begun testing. We were nervous, but certain that she would be okay that nothing could be truly wrong.

Several months later while my husband was auditioning for the lead role in Hamilton, an American musical. Adelaide had her first seizure over the next week. Yeah, we were in and out of the hospital and Miguel was okay. And out of casting rooms, our sweet girl was diagnosed else with a condition called epilepsy.

With that one word, our lives would never be the same.

David Hirsch: And I love the title. It’s very, uh, creative, which is seizing life. Was that her idea, your idea, or was that something?

Miguel Cervantes: No, no, they, they, this is, she has blossomed, you know, like, The idea of, you know, I think it’s dumb, but there’s nothing, there’s no other real early, like silver, like a silver lining.

Like again, like keep your silver linings. Like I don’t want it, but you know that one of the things that came out of all this was Kelly developed this sort of advocacy. Persona that the cure folks reach out to her and said, if she would be interested and they, they brainstormed. And she came up with this idea, started with like, I think seize the day, you know, sees like, you know, so clearly seizures are part of our life, part of the epilepsy community seizure.

So it’s a pretty easy jump to jump to something about like that. And, uh, that’s, that’s where it was born out of that meeting that she was in and she she’s run with that. She’s run with that. And that’s where the blog came from trying to. Um, tell the story of our life with Adelaide that most people would never, ever, ever even know.

People would never know that these things are happening every day. Unless someone like my wife gets out there and tell that someone like a special needs parent is the only person who can tell you what it is that we go through every day. And that’s, that’s where it came from.

David Hirsch: Yeah, well, I think it’s an amazing resource.

I both the blog as well as the seasoning life weekly podcast. And, um, I had the benefit of listening to one of the early on episodes with, um, Lauren SEARO, uh, Adam Levy and, uh, Lauren are the parents of Nora and therefore the sort of, uh, spiritual leaders of Nora’s organization, the Nora project. So, uh, you know, it’s interesting how people’s lives cross paths or that they’re intertwined.

And, um, you know, we’re proud to have you as part of the network, and we’re certainly proud to have Adam as part of the special fathers network as well. I think

Miguel Cervantes: that’s, that’s, that’s one of the, you know, another silver lining is you are forced into you search out the, I need to find a community of people like minded people.

You know, we linked up with a. Group of folks with kids with special needs or also has some seizures from a complete different reason. It’s a completely different reason. And yet we are kindred souls with those people and other, the other families we have, we have met that we would never have met otherwise we would never know their stories.

We would never know how hard they were work and how hard it is that they fight for their kids and their family members. So, well, I guess we will, we will cherish those relationships, even though we are no longer. Physically connected to them. Um, we will always be part of that community.

David Hirsch: Good point. So you’ve done PSS.

You’ve done speaking engagements. You do a lot of fundraising. I remember there was something locally with the fairgrounds coffee. They actually. Blended a coffee and called it Adeline’s blend or something or,

Miguel Cervantes: yeah, Adelaide Adelaide’s blend. The, uh, owner of fairgrounds is Michael. Shelter’s become a very dear friend of ours, um, said, Hey man, I’ve got three healthy kids, four, four healthy kids now.

And I am just a dad. Uh, like you. And how can we help? And I said, I don’t know, man. He said, well, you want us to make you a coffee and we’ll sell it. And I was like, yeah, let’s do that. So he roasted up a coffee, had his roasters roast up a coffee and they sell it at fairgrounds. And there’s a couple of, there’s an outlet, I think on online it sells it and all a portion of the proceeds I’ll go to cure and their work that they’re doing.

So, you know, she’ll have a little legacy that we’re going to leave behind and she’ll always have a, a place in this fight, even though she’s not here anymore. Yeah,

David Hirsch: that’s fabulous. Um, I also noticed that you created a, an original song entitled, uh, till the calm comes with all the proceeds going to support here as

Miguel Cervantes: well.

I have only one heart, and that is the part that makes the tears from a smile and picked up a pain. The sting, it fails the same, like the trails lift on my face. And there’s no way to know which way the wind blows today.

David Hirsch: Where did that come from?

Miguel Cervantes: What’s the back story. It was just a guy I met asked one day, his name was Irene Tillis, local, local producer, and said, Hey, have you ever written songs?

I said, yeah, you know, I thought of it before, but another really, and I had a Shearer was doing their big annual gala. In a Navy pier that year, that first year in 2016. And so I sat down one day and sort of rope. Wrote some words down and that’s where it came from. Um, and it’s the only song I’ve ever written.

Um, and, uh, it was dedicated to her and it was very easy to write because you know what, if you deal with seizures or epilepsy, all your way, all you want is for them to stop. That’d be some calm, like I said earlier. So, and I think it has. It’s not really what my intention was, but it was just a way for me to sort of express what I thought, but it has sort of helped other people, folks who know what we’re talking about had heard it and, and have appreciated it.

So that makes it even more special that it touched other people in the same way that I was, I was affected by it.

And before it’s too late.

David Hirsch: yeah. Well, thank you for sharing again. It’s a straight from the heart and it’s very touching. Um, so under the banner of advice, I’m wondering if there’s any advice you can offer to a parent father for that matter, raising a child with a difference.

Miguel Cervantes: You know, I think. In sort of navigating all the different emotions that happen and there’s so, I mean, there’s just unimaginable emotions and moments of grief and moments of anger and moments of like guilt.

I think the biggest, the biggest thing to remember, and I constantly even still need reminder or reminder of this is that I grew up in a way of thinking that I could handle. Everything and anything on my own. Uh, I did a lot of things on my own. I didn’t need help to do a lot of things in my life here. We are struggling to care for this child.

And the one thing I realized was that a all of those emotions were correct. All of them. From the anger to the sadness, to the, they were all correct. Everything was exactly right. And also you are not doing this alone, whether it’s your partner, whether it’s your family and allow people to help. When people say, we’re thinking about you, what can we do?

There may not be anything they can do that visit actually. But. People who are closest to you, you are allowed to actually ask them for something, whether it’s just to talk or to listen, or to just hang out, like you are actually allowed to say, Hey, I need you. And that’s important when you’re life inside of your own house or inside of your own brain and studying your situation is sometimes feels unimaginable.

Um, That, that isn’t, that’s an okay thing to do. And I think I needed to, I needed that a lot to remember that a lot. Not that anything would have been better, but I think maybe there would have been a little bit less, less punches thrown at walls. Um, if I had maybe allowed some folks to know that I want it to.

David Hirsch: Yeah, well, I think I can relate a little bit, uh, you know, our country, our culture, you know, is fiercely rugged individualists, right. And we’re sort of taught more men, I think are taught this to try to figure it out on their own. And it’s, it’s a liability really, to, you know, we joke about trying to get from point a to point B.

You know, and I’m not going to pull over and ask for directions. I’m going to figure this out myself and I’d in and say, you know, thank God for GPS. That’s saved a lot of relationships over the years. You know, we have to admit that we don’t have it together and maybe not be. A hundred percent transparent about our vulnerability, but just a willingness to, like you said, open up and accept some help.

And especially when people are asking to help you, right?

Miguel Cervantes: Yeah.

David Hirsch: It’s a strength. It’s not a weakness to be able to ask for help because you know, we all need help in one way or another. So out of curiosity, why is it that you’ve agreed to be a father as part of the Special Fathers Network?

Miguel Cervantes: Um, I remember when. We started all this whole, this whole journey.

You’re just searching for someone who can relate. Can, you can understand what you’re talking about. You understand what you’re saying? You’re just searching for something to hold onto in some way that will, that will show you that you’re not alone. You know, that’s what I have to offer in this world of special needs is I have been there.

I know what you are feeling. I certainly hope that. Everyone’s situation does not happen like mine, but regardless. So how it actually is happening, the emotions are, we’re all playing the same game, right? We’re all in the same field. We’re all playing different positions. And sometimes we have different balls, right?

Like some, but I’ve thrown a football around and some guys are hitting golf balls and maybe somebody is shooting occupy. We’re all on the same field in the same. World. And I think that’s, that’s a valuable thing to understand is that there are people who know what you are feeling, what you feel, know what you’re feeling.

And that’s, that’s what I have to offer.

David Hirsch: Yeah. Well, thank you for volunteering to be one of the mentor fathers, even though you’re such a young dad, we’re thrilled to have you as part of the network and what an inspiration you are to so many others. Let’s give a special shout out to Debbie Heck acureforepilepsy.org for helping connect us.

Miguel Cervantes: Amen. Amen. And check out kellycerantes.com. I consider myself like a monkey with symbols. Right. So, you know, like the little windup monkey uh, and my real job is to point you towards her direction and the story that she’s telling, I think, uh, um, that’s what that’s, that’s my, that’s my role in this team.

David Hirsch: Okay. Oh, we’ll put that in the show notes. Is there anything else you’d like to say before we wrap up?

Miguel Cervantes: No, I think, uh, I think we got it. I got it all covered. You know, I think, uh, it’s a, it’s a, it’s a tough, it’s a tough life, um, that we have to go through as a special needs community. And I just hope that people can find comfort wherever they can. And that’s, I think that’s an important part of, of getting through this as a community together.

David Hirsch: Excellent. So if somebody wants to learn more about cure or information about epilepsy, uh, your work Kelly’s work or to contact you. What’s the best way about going to do that?

Miguel Cervantes: Um, I have a website called migcervantes.com. There’s stuff about epilepsy. There’s stuff about Kelly’s blog. There’s stuff about, you know, Hamilton. Uh, there’s lots of, lots of different stuff on there.

So check it out. Um, you can learn a little bit about what we’re doing and, and, and how to help out with cure and, and all the work that my wife does as well.

David Hirsch: Miguel, thank you for taking the time in many insights. As a reminder, Miguel is just one of the dads. Who’s part of the Special Fathers Network, a mentoring program for fathers, a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org. Thank you for listening to the latest episode of the special fathers network, dad to dad podcast. I hope you enjoyed the conversation as much as I did.

As you probably know, the 21st Century Dads Foundation is a 501 c3 nonprofit organization, which means we need your help to keep our content free. To all concerned, please consider making a tech stackable donation. I would really appreciate your support. Please also post a review on iTunes, share the podcast with family and friends and subscribe.

So you’ll get a reminder when each new episode is produced.

Miguel, thanks again

Miguel Cervantes: Thanks so much for having me.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: Thanks for listening to this Special Fathers Network dad to dad podcast, to find out more about the Special Fathers Network, go to 21stcenturydads.org. You can see right here. The dad to dad podcast is produced by Couch. Audio.