I Don't Know How You Do It
Meet the people who stretch the limits of what we think is possible and hear "I don't know how you do it" every single day. Each week we talk with a guest whose life seems unimaginable from the outside. Some of our guests were thrust into extraordinary circumstances. Others chose them voluntarily.
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The athlete who learned to walk again and became a paralympic gold medalist after being in a coma for four years…
The woman who left the security of her job and home to live full-time on a small sailboat...
The child-welfare advocate who grew up homeless and turned his gut-wrenching childhood into a lifetime of making a difference...
The mother who worked with scientists to develop a custom treatment for her daughter’s rare disease…
They share their stories of challenge and success and dive into what makes them able to do things that look undoable. Where do they find their drive? Their resilience? Their purpose and passion?
You'll leave each candid conversation with new insights, ideas, and the inspiration to say, "I can do it too," whatever your "it" is.
I Don't Know How You Do It
Navigating Grief and Joy Inch by Inch with Kelly Cervantes
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
In May 2016, Kelly and Miguel Cervantes received two life-changing pieces of news: Miguel landed the starring role of Alexander Hamilton in Hamilton: An American Musical and their then 7-months-old baby, Adelaide, was diagnosed with epilepsy and eventually, infantile spasms, a severe form of childhood epilepsy.
Kelly transitioned from being their family’s primary bread winner to being a stay-at-home mom/nurse/pharmacist/therapist and all the other jobs that come with parenting a medically complex child. A few years later, Adelaide passed away.
In this conversation, we talk about Kelly's journey from career woman to caregiver while Miguel was starring in one of the most acclaimed shows of all time, how parenting Adelaide changed the way she approaches parenting her other children, and how Kelly's life's work is forever changed.
You'll learn:
1. Why it's okay if you're not okay...but also if you are...while grieving
2. The importance of recognizing and honoring life's inchstones
3. The most important superpower you can have when your life is turned upside down
Kelly Cervantes is an award-winning writer, speaker, and advocate best known for her blog, "Inchstones," where she shared the stress, love, and joy that came with parenting her medically complex daughter. Since Adelaide's passing, Kelly has continued to write candidly about her grief journey, culminating in her upcoming book, "Normal Broken."
Pre-order "Normal Broken" here
Read Kelly's blog Inchstones here
Read the poem mentioned in this conversation, "Because My Heart is Where You Now Dwell," by Rosemerry Wahtola Trommer
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Music credit: Limitless by Bells
Jessica fein
I'm Jessica fein, and this is the I Don't Know How You Do It podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. Welcome to this week's episode.
Before we get into today's incredible guest, I want to thank everybody who entered the contest to win a copy of 99 Fire Hoops by last week's guest, Alison Hong Merrill, and to congratulate our winner, Darcy H.
Now, on to this week's guest, Kelly Cervantes. Kelly is an award winning writer, speaker, and advocate, best known for her blog, InchStones, where she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide. Kelly and her husband, Hamilton star Migues Cervantes, were recognized as Chicagoans of the Year by Chicago Magazine in 2017 for their work in the Epilepsy community. Since Adelaide's passing, Kelly has continued to write candidly about her arduous and, at times, contradictory grief journey. Her debut book, “Normal Broken, the grief companion for when it's time to heal but you're not sure you want to,” is coming in November and is available for presale now. This conversation is a highly personal one for me. I think you'll find it of interest if you've experienced grief yourself or if you care about somebody else who's experienced it, which means it's pretty much of interest to anybody. Grief is so universal, and yet it's something we don't really talk about. Kelly and I dive in without leaving anything on the table. And now it is my great pleasure to introduce you to Kelly Cervantes.
Jessica fein
Welcome, Kelly.
Kelly Cervantes
Thank you.
Jessica fein
I have to tell you, I've gone down a bit of a rabbit hole with your blog. Once I started, I could not stop, and now I can't wait for your book to come out. Like, I think we need to talk to the publisher and make them ramp it up. I don't want to wait till November.
Kelly Cervantes
Thank you so much. That's so sweet.
Kelly Cervantes
The blog started as just sort of an outlet when Adelaide, my daughter, had been diagnosed, and I just needed a place to vent or connect with people or something. And then people started responding to it, and then it was an incredible outlet for me when I was grieving her after she passed away. Writing was like a salve for me, and so the book was really born out of that. It's called normal broken the grief companion for when it's time to heal but you're not sure you want to.
Jessica fein
You just said so much, and I have so many questions about everything you said. So let's start at the beginning.
Kelly Cervantes
Perfect.
Jessica fein
Okay. In May of 2016, you and your husband, Miguel, received two pieces of life changing news. Tell us about that.
Kelly Cervantes
Yeah, it was all within the same week, which is just sort of mind boggling to think back on now. But our daughter Adelaide had been born the previous October. She had hypotonia, like low muscle tone and there were a handful of other things. And then she had a seizure and she was diagnosed with epilepsy that week. And we still didn't quite understand the full scope of what we were walking into. I just thought that she was going to have a seizure every once in a while or maybe we could get it under control with medication. Physically, she was developmentally behind, but neurologically, she seemed to be on track. So just no real gauge of what was happening.
So that was the beginning of the week and then the end of the week, actually. It was my last day of work. I was working at a restaurant in Tom Colicio's restaurant group, coordinating and selling events, and it was my last day there. I was supposed to start with a new restaurant group the following week. And I'm out to dinner with my colleagues and Miguel calls me and tells me that he has booked Hamilton in the musical Hamilton and that he is going to be performing on Broadway for the summer. And then we're moving our family to Chicago, and he's going to open the production in Chicago. And it was a little bit of a whirlwind moment at that time.
Jessica fein
Was Hamilton already Hamilton like, was it the huge thing that it is now?
Kelly Cervantes
It had opened on so let's see here. So this was May of 2016. Hamilton opened on Broadway in September of 2015. And before that it had been at the public in downtown New York before it had moved to Broadway. So it hadn't quite reached the fervor pitch that it would because the cast recording hadn't even come out yet. So when Miguel was preparing for his auditions, he was listening to recordings of the music director singing along or Lynn singing because there was no cast recording yet. So it was a huge deal in New York. Everyone was talking about it, but I don't know that it had quite gone national yet, just because I feel like it was when the cast album came out that really happened.
Jessica fein
So did you have any idea? I mean, obviously to get a lead in a big show is huge anyway, but did you know what this meant?
Kelly Cervantes
Yes and no. I had an idea. I mean, this was a huge step for Miguel's career. He had been on Broadway before, but typically in the ensemble, so this was his first lead role on Broadway. I knew that Hamilton was huge. I knew that this was potentially life changing, but I don't know, it's hard to explain. In this business, you quickly learn that nothing is guaranteed and it could all potentially be fleeting. We had no idea how long this would last we were moving to Chicago. I had been to Chicago a couple of times, once when I was 18, to see a Dave Matthews Band concert after I graduated from high school. I had no idea how that city would just wrap us in their arms. What a big deal Hamilton would be in Chicago. There was no way that we could properly prepare for how life changing that phone call was.
Jessica fein
So this is one week with two wildly different life changing events. What was it like to navigate these two new realities at the same time?
Kelly Cervantes
In one word, overwhelming. Although sort of selfishly. So my daughter is sick, she's having seizures. I realize that we're going to have to pull her out of daycare. I realize I'm not going to be able to accept this new job that I have to call and tell them I'm really sorry, my daughter needs me also. My family is moving to Chicago. So in that moment, I was actually quite a bit selfish and freaking out about what was going on in my life and what was happening to me, at least in the short term, because I had always identified, personally identified, with my career, and that had been really important. I was the one with the stable career. Miguel was in and out of shows, but I bought our house and all of a sudden I wasn't working and I was struggling with that. And then it was only about a month and a half later that Adelaide would be diagnosed with infantile spasms, which is a particularly devastating form of pediatric epilepsy. Causes major regressions. It's very difficult to get under control. And that was sort of when I began to realize the arc that our life was about to go on. And the fact that I didn't have to work was actually going to be an incredible blessing for our family.
Jessica fein
So you had been the primary breadwinner. Now you become all the things that we become in this situation. Chief nurse, medical examiner, advocate, cheerleader, all the things. What was that transformation like for you?
Kelly Cervantes
I did it begrudgingly. I never wanted to be a stay at home mother. That was not my passion. I got my lowest grade in high school in human physiology. Medical was never a position I saw myself in, let alone like, Google dumpster diving. White papers at 03:00 in the morning with, like, a medical dictionary open in one screen and the white paper open in the other, trying to figure out what they were saying. This is just not the path that I ever saw for my life. I got really depressed. I was used to having sales goals that I needed to meet and getting congratulated for them. And I had a lot of resentment for Miguel too. He got to leave the house every day. The only time I left the house was when it was something to do with the kids. But he got to get a standing ovation every night. He got to go out with friends for drinks after the show and celebrate. And I was at home administering Gtube feeds and medications and monitoring seizures and our son Jackson was four at the time. So tantrums and everything that goes along with being four and it took some therapy and some antidepressants and figuring out how to own my own power and figure out where I could add value outside of our home, I needed that. And I was able to find that in volunteering with the organization Cure Epilepsy which is the largest non governmental funder of epilepsy research in the world. And they do incredible work and they understood that if I volunteered for something and then Adelaide had to go into the hospital they were like cool, hope it goes okay, let us know if we can do anything. And so that way I could still be a part of something and still feel active. But at the same time my time was not my own for four years. It was Adelaide's and it was Miguel. So I worked around their schedules.
Jessica fein
How did you and Miguel reconcile that? Because I know in a quote unquote normal situation without one person getting standing ovations every night, there can be a huge amount of tension, even in the strongest best of relationships when you're dealing with something this intense. And then you had this added layer. How did you guys work through that?
Kelly Cervantes
Lots of communication. I would check in with him but also I told him and he listened. I was like, look, I need you to recognize all that I'm doing. And he always did and still does to this day. He'll get up on stage and be giving a performance at a corporate event or something and he'll talk about our experience with Adelaide and call the stay at home caregivers, the heroes shining his spotlight somewhere else. And that always felt good just to know that someone saw what I was doing. I think that ego gets such a bad rap but we need some of that. I think as caregivers we feel like we need to be selfless but we're still human and we need someone to be like, you know what, you are doing a good job.
Jessica fein
I think that the word selfish gets a bad rap because selfish is just that we are thinking about ourselves and I think that's so important. I mean, not obviously to the exclusion of everybody else, but I feel like we need to be selfish, right? Yes. And you said at the beginning that you felt like you were a little bit selfish because when you got the news you were thinking about how it was going to impact you in terms of your career. But that's not selfish. Your whole world had changed. When your child's world changes so dramatically, it's a new world for you too. As the parent, not to mention the other extenuating circumstances.
Kelly Cervantes
So true.
Jessica fein
Yeah. So one of the things I just read that you wrote today was about general societal depiction of parents who have lost children. This resonated with me personally. So powerfully, what you said, and I'm going to quote you to you, so I hope this doesn’t embarrass you.
Kelly Cervantes
Go for it.
Jessica fein
You said, “I figured if your child died, then you lived forever in grief purgatory. You might as well walk around with whatever the child lost version of The Scarlet Letter is because you are never, ever allowed to experience joy again. This reinforced stereotype caused me an enormous amount of conflicted guilt because I inherently knew and understood in the rational recesses of my brain that deeply grieving forever was not healthy for myself or those I care about. Yet I remained terrified of what other people might think of me if they didn't see me constantly grieving Adelaide.”
Kelly Cervantes
I mean, thankfully I have a mother who is a mental health therapist, so I feel like I had been taught what healthy grieving should look like. But I still felt this enormous pressure. If I wasn't grieving her, if people didn't see me grieving her, did that mean that they thought that they didn't need to grieve her and they could forget about her? And how was I supposed to let people keep her memory alive if people didn't see me being sad about it? But my family needed me still. My son, my husband. They needed me. I couldn't stay in bed all day. I couldn't just succumb to my grief and depression. And I did for a while. I think that grief can be really dark, and it needs to be at some points, especially in those early days. You have to lean into that. You have to give into it because you don't have another choice. And if you don't, then you're forcing something along that is unhealthy. But there is a time when healing needs to enter the equation and we can be happy again. It's okay to be okay. It's okay to be happy. It's okay to enjoy life again. And I know even if there are few and far between examples of this in the entertainment that we digest on a regular basis, it exists out there. And that should be the goal. I know that Adelaide isn't looking down and being like, wow, mom, you're not crying enough. There's no one measuring my tears. I still grieve her daily. It's been three and a half years and I still miss her terribly. There's not an hour that goes by that I'm not thinking about her. But I can still live my life. I can still enjoy my life and find happiness in it. And that didn't happen overnight. It has taken years, it has taken hours of therapy and writing and processing my grief. But we all deserve that. Regardless of what we have been through, what is in our past, we all deserve to have happiness in our future.
Jessica fein
It's so interesting that you say it's okay that you're okay, because of course, many of us know Megan Devine's work in her book It's Okay That You're Not okay. And what a gift that book is.
Kelly Cervantes
100%.
Jessica fein
It's amazing. And I've found it helpful and I've given it to people and it is truly an important book. But the flip side of it is so important what you're talking about. It's also okay that you're okay earlier on than you in the process. But right from the beginning, I couldn't stand when people would say to me, how are you? Because I felt like there's no way to answer that question. Because if they happen to have caught me on a day when I'm okay, you feel like you're betraying your child. If you say, I'm actually doing all right, then you feel like you're betraying your child. You feel like you're going to be judged. It's really this kind of shitty no win situation.
Kelly Cervantes
Yeah, it totally is. And then if you lean into the other side and you're like, well, I'm having a really hard day today. People don't know how to respond because we don't talk about grief the way that we should. It's uncomfortable. And instead of leaning into the uncomfortableness and sitting with someone in those dark places, at some point in our society, there became a shift to feel like we're responsible for lifting people out of it. That the person talking to them. Like they have to give them these tropes, tired tropes of like, well, they're better, they're better playing another angel, whatever it is. And you're like, yes, is if someone can help you with your grief with a tired phrase. And I know that it all comes from a place where they mean well and they just want to help in some way, but we don't have the dialogue around what that actually looks like 100%.
Jessica fein
And I do think also it is on the griever often to bring the people who are comforting along pressures on them. But I think for many people, and I know I used to feel this way, you want to do something to be, quote unquote, helpful, and you think that is bringing cheer in some way. And sitting in sadness is hard. It is. And it's uncomfortable and it's awkward and we don't like to be uncomfortable and awkward. But it's so strange to me because I feel like grief is one of the few universal things we're all going to experience it. So it ought to be something that we talk about more and get more comfortable with. And I know that's a part of what you're doing with the book.
Kelly Cervantes
Yeah, that's the idea is that grief is normal. It is normal to be broken, and sometimes you just have to sit and find your people to be normal broken with. My goal for the book is not to be some sort of grief guide because I don't know that that's a possibility. I don't know that you can have a guide specifically to walk through grief with because everyone grieves differently and it's not a linear process. I wanted this to be more of a companion piece where this is what I experienced. Take from it what you will, and here's what I found that helped. And if that doesn't work for you, you do you that's totally okay. No hard feelings here. It is written so that the chapters can be taken out of order. They are titled when you don't want to get out of bed. When there is an anniversary or other meaningful date. When you want to be alone. When you're ready to be okay. So that wherever you are in this nonlinear grief journey, you can pick up the book and find that chapter and have a friend who will sit in the dark with you in that specific moment of your grief journey.
Jessica fein
It sounds like the kind of book that is maybe not only for somebody who is themselves grieving, but when somebody you love is grieving and you don't know what to do. It sounds like this might be useful.
Kelly Cervantes
It's interesting that you say that, because I had my husband read it. He's featured heavily in it, so I figured he should probably approve his many appearances. And he told me that it helped him understand so much what I experienced and how I was grieving. Because we grieved very differently. We're still grieving differently. And it has taken lots of communication about what our specific needs are. It required me to turn to other people for certain things I needed while grieving, things I normally would have gone to him for he wasn't able to give me. And that's okay. That means I just needed to look somewhere else. But we had to have that conversation to understand that he wasn't going to sit in the bathroom and ugly cry with me. That just wasn't a place he was comfortable with. He was going to grieve at night by himself, and that's how he needed to grieve. And there was nothing wrong with that, that he needed to grieve alone, and I needed someone to grieve with me. And so having those conversations helped. But even after having those conversations, he said that there was just so much that he didn't know that I had felt and experienced that he now understood better having read the book. And so I wonder if there are those disparate grieving experiences that loved ones are having if something like this couldn't help.
Jessica fein
My sister died when I was 27, and she was 30. And this was my first huge, huge loss, and it shaped all the losses that came after it, even Dahlias. I really saw the world differently after that happened. And so one of the things that was surprising to me was that all of us in the immediate family grieved differently. The loss felt different to each of us because she was a different person for each of us, older sister, daughter, whatever. And it was surprising to me because it felt isolating. And I would have thought that the person closest to you and the person you lost, that you'd be together in sync on it. And I experienced exactly what you're saying, that people experience the grief, the loss differently and having that extra support system, who's one circle removed, how important that is. Who did you go to? Who's in that circle for you?
Kelly Cervantes
So, for me, that was my best friend in Chicago, Jenny. And she was there for me to pick me up and take me to a workout class in the mornings, just to get me out of the house for an hour on the one year anniversary of Adelaide passing, which was five days before her birthday. So it's sort of boom boom with those two. We were living in Chicago when Adelaide passed away, but then Miguel got offered Hamilton on Broadway, so during the pandemic, we moved. So I asked her and her family if they would, during the pandemic, fly out. I asked them to fly out and be with us because I knew that it was going to be a really hard day and that Miguel wasn't going to be able to be there for me the way that I needed and I didn't want to set us up for disappointment and further heartache. So I asked them to fly out and be with us so that I could have a person there who was just going to lay in bed with me and be upset and then make jokes and watch silly TV shows with me and be present in the way that I wanted and needed someone to be on that day.
Jessica fein
Wow, that's really impressive that you had that forethought to do that, instead of finding yourself on that day being like, oh, where's Jenny? We all need a Jenny.
Kelly Cervantes
I feel like I asked her to come out, but she also might have invited herself out. I'm not quite remembering which came first in the book.
Jessica fein
One of the things that you talk about is when you don't want to heal. Yeah, and that strikes me because it's really counterintuitive.
Kelly Cervantes
I struggled for over a year with the idea of wanting to heal. I felt like everybody else wanted me to heal. Everywhere I went, people were throwing positive vibes and recommending books and praying and I was perfectly content in my grief. Cocoon snuggled up in blankets because I thought that healing meant not grieving and letting her go and not remembering in a certain way. And it was a speech that actually President Joe Biden gave right before his inauguration. It was a memorial for all of the people we had lost to COVID-19. And in that he said, to heal, we must remember. And that was the first time that I had ever thought of it. That way. And I was like, wait, so I can remember her and I can hold on to the pain because at this point, the pain is just the opposite side of the coin of my love, right? So I can hold on to that and I can still heal. And I didn't understand until that moment that I could have both, that I was never going to stop grieving, that I was never going to not miss her memories fade, but there are going to be certain things that I'm always going to have of her inside me. And I could hold on to all of that but still start to poke a finger out of my little cocoon.
Jessica fein
And Biden…I mean, if anybody who knows, right? Talk about somebody who’s been front seat to so much loss. But what you say about the coin and the idea that grief is the price we pay for love, right? I read something, a poem recently and I can't remember who it was, but I will look it up and put it in the show notes because it was so gorgeous. It's about a mother grieving her child and it was about how the mother was making her own heart a beautiful place because that's where her child is now living.
Kelly Cervantes
That's gorgeous.
Jessica fein
The poem is just stunning about how she's doing that. I think that is just a really beautiful way to think about it. I mean, Adelaide Dahlia, these kids are living in us, so how can we honor that?
Kelly Cervantes
It's not a burden, but it is something that I feel so heavily responsible for is maintaining her memory and realizing that it's the stories that I share that are going to shape that memory. It's not a burden as much as it is a responsibility. And I feel that it's something that I need to do with the rest of my life is just to make sure that her memory and her story and her journey means something, that it wasn't all in vain and that she gets to live on in that way. Because my life is forever changed because I was her mother and I will never be the same person that I was before her. And while I wish more than anything that she didn't have to struggle and suffer and ultimately die, I wish she could have been healthy and happy and lived a longer life. I also recognize that I would never have had as fulfilled and meaningful of a life without having known and loved her.
Jessica fein
I 100% understand and feel what you're saying. I've had people say, why do you want to stay mired in that space? And it's not it's not being mired to your point. It's spreading and it's keeping the stories and the memory alive and the impact. I feel like spreading her impact.
Kelly Cervantes
Yeah. I had a friend asked me that the other day. They're like, how do you post pictures of her? How do you go back and look at photos of her. And I'm like I look at photos of her every day. I love looking at photos of her. I love talking about her. Yes, there is pain attached to it. And certainly when I was earlier in my grief, that was a little bit harder at times, but I feel like I put a lot of work in. And now that's my connection to her. That's the way that I get to still be with her and think about her and love her. And of course I want to look at pictures of her. She was too stinking cute.
Jessica fein
She really was. Yes.
Kelly Cervantes
I mean, those thighs and those cheeks and you just want to snuggle and smoosh and so what parent doesn't want to talk about their kid?
Jessica fein
I had somebody give me some pictures the other day. They said, I don't know how you feel about this, but we came across these pictures and they were a little bit hesitant. And I was like, this is hands down the single best gift I've ever received. It was pictures I hadn't seen before. And I said, you know, I don't get to make any new memories with Dahlia when I see pictures or videos that I haven't seen before, I do get to create a new memory. And so if anybody's thinking about talking about the person who's died or giving pictures or bringing it up and doesn't know, do it, do it, do it.
Kelly Cervantes
One of the standout memorable moments for me is I actually met someone new. It was a mother of one of my son's friends and they were playing baseball or soccer together. This is something I don't even remember. And she came over and she was like, oh, you're Jackson's mom. I was like, yeah. We were just chatting. She's like, do you have other kids? I was like, well, we had a daughter, Adelaide, and she passed away. And she gave me the look of shock and sadness and pity. But then she followed it up and asked me, what was she like? And no one, I realized, had ever asked me that before. When I told them about Adelaide and her passing, there were questions about her health conditions or how we were doing or about grief or about this, but no one had ever asked me about her and what she was like. And it just meant so much to me that someone would want to know more about her.
Jessica fein
Yeah. So what advice do you wish somebody had given you along this journey?
Kelly Cervantes
That being adaptable is the greatest superpower you can possibly have. I was a planner by trade, for goodness sakes. Like, I planned out everything physically and like, a daily planner, and everything had its place. And then this medically complex disease enters our life and there is no room for rigidity anymore. Everything has to be flexible. And then as Adelaide deteriorated, this understanding of what she was able. To do today, she's not going to be able to do tomorrow. And the constant changing of medications and then adapting again to life without her. So being adaptable, softens some of those blows, they're still hard, they still pack a punch. Right. But if you can adapt, if you can let go of what you think should happen and be okay with what is happening, then you're ten steps ahead of anybody else.
Jessica fein
That's great advice for everybody. Even not going through what we just described.
Kelly Cervantes
That's true. Screw your five year plan, right?
Jessica fein
Exactly. All right, so you have Jackson, you have Adelaide, and now you're in the process of adopting another child. So, first of all, congratulations.
Kelly Cervantes
Thank you.
Jessica fein
And you wrote that you were nervous about parenting a neurotypical child, and I stopped in my tracks at that one and I had to read that a second time because, of course, when we find out that our child is not going to be, quote, unquote, typical, of course we're petrified. But the idea of being nervous about parenting a neurotypical child was so interesting to me.
Kelly Cervantes
Well, yeah, I mean, I had just come off four years of managing a child that was nonverbal and not mobile and had all of their foods through a tube in their stomach, and now I was going to have a child that can talk back to me and run away. And I had all of that with Jackson, with my son, who's ten now, but it felt like so long ago that, for better or worse, he was forced to grow up pretty quickly and become more independent than your average four, five, six year old is. And so I was very nervous, I felt very dusty in my negotiation skills with a toddler. I was like, it's a different kind of skill and patience that's required for a child throwing a temper tantrum than there is for one having a seizure.
Jessica fein
That's true, that's true. So what parenting skills did you learn from parenting Adelaide that you've brought to bear with the other two? It sounds like adaptability is a big one.
Kelly Cervantes
Patience for circumstances. And also being able to read nonverbal cues. Because I didn't have speech with Adelaide to communicate with her, so I had to look at other cues, I had to find other ways to communicate with her. And so I've definitely taken that with both of the other children and sort of watching them for what their nonverbal cues are telling me, because, yes, they're ten and four, but that doesn't mean that they're excellent communicators. I mean, goodness gracious, adults often aren't excellent communicators.
Jessica fein
We need to learn the nonverbal cues for adults, for sure, yes.
Kelly Cervantes
So I feel like that has helped significantly. I'm just trying to have that empathy to put myself in their shoes and how powerless it can feel to be a child. There's still major boundaries in our house and rules and responsibilities and all those things, but also holding space for sometimes it's hard to be a kid, even if from the adult side, we would love to have little responsibility and meals prepared for us, all of that all over again. But we get to choose what we have for dinner and so the amount of choice that we get versus the amount of choice that they get. So I do try and hold some space for that as well than just empathy. Empathy, empathy, empathy.
Jessica fein
So now that your life has changed so dramatically and as you say, you are a different person than you were before, would you consider going back to the career that you left?
Kelly Cervantes
No.
Jessica fein
That ship has sailed. No.
Kelly Cervantes
I have too much life perspective at this point, I think to sit across from a bride and have her tell me or complain about X, Y or Z. I just have this understanding of what is important to me in this world. And I feel like I have this calling feels like the wrong word here, but I want to make change. I want to make big change. I want to be helpful. I feel like I have experienced something and have the ability and the words and the platform in certain ways thank you. Hamilton. To help people or to be that companion or to put words into something that other people are feeling. And so that's where my passion lies now. I've been so honored and fortunate. I'm the board chair now of Cure Epilepsy. And so being able to sort of lead that organization alongside our staff and with the rest of our board members has been an incredible experience. Hosting my own podcast for Cure epilepsy called Seizing Life, where we get to interview all sorts of epilepsy patients, caregivers advocates, clinicians, scientists, researchers, and share those stories through the writing and the book and public speaking. This is far more meaningful work to me and I just am so grateful that I have this space to do it well.
Jessica fein
Everybody who is listening to this should absolutely go preorder the book today. In the meantime, we can get our fix by reading the blog, which we didn't talk about the name of the blog, which I just love.
Kelly Cervantes
Yeah, so the name of the blog is called Inch Stones, which is really common word in the disability community because there's so much focus, especially in early childhood, on children meeting milestones. But when you have a child with a disability, a lot of times they can't meet those milestones. So you celebrate their inch stones. If the goal is walking, then the inch stones are, at the most basic level, just holding their head a little bit better, or maybe it's taking another step in the gate. Trainer and those are your inch stones and you celebrate them as much as milestones. But when Adelaide, when we discovered that her condition was neurodegenerative and we were no longer even able to mark her inch stones. I repurposed that word personally. And so it became more about my personal inch stones emotionally, sort of accepting Adelaide for who she was and the life that she was living. I started celebrating my small inch stones, which was like in grief, surviving a day. You don't realize how long a day is when you're grieving, people be like, just take it a day at a time. I'm like, do you understand how many hours are in a day? There's 24 of them. So it was surviving a day and celebrating it with a piece of dark chocolate or celebrating our move cross country in the pandemic in the middle of grief. I celebrated that. And so it's about celebrating those smaller moments that maybe don't get the tally mark on our life timeline that you feel they should or are traditionally celebrated, but still taking a moment to be like, you know what? I brushed my teeth today. And there was a moment several months ago where I couldn't even get out of bed to brush my teeth. But I did that today. And so you know what? Go me.
Jessica fein
Oh, it's just so great. I love that. And it's another thing that it doesn't matter where you are in life, but you should be celebrating those in stones. Absolutely. Thank you. Thank you. Thank you for being here with us. And I am going to make sure that we have the link to the blog and to the preorder in the notes. Everybody should check it out. And for the three people in the world who haven't seen Hamilton, they should go see it. Thank you.
Kelly Cervantes
Seeing it on stage is next level.
Jessica fein
Thank you so much.
Kelly Cervantes
Thank you. It was so lovely to talk to you, Jessica. Thank you.
Jessica fein
I could have talked to Kelly for another several hours. I love how even though her life has been so far from conventional, the advice she shares can apply to everybody. Here are my main takeaways. Number one, sometimes your support person isn't going to be the person closest to you, and that's all right. Recognizing what you need and who can offer that is important. Number two, when you're going through the darkest situation, it's okay that you're not okay, but it's also okay if you are okay.
Jessica fein
Number three, being adaptable is the greatest superpower you can have. Number four, empathy for the kids in your life is so important. And number five, my personal favorite, celebrate your inch stones. Thanks so much for listening. If you're enjoying the show, tell your friends about it. I've got a ton of great episodes coming out, so don't forget to follow rate and review the show. Talk to you next time.