Kelly Cervantes on Loss, Healing, and Finding Purpose

In the Season 4 premiere of the Speaking of Phenomenal podcast, host Amy Boyle welcomes award-winning writer, speaker, and advocate Kelly Cervantes. Kelly shares her profound journey through grief after the loss of her daughter, Adelaide, who was diagnosed with severe, uncontrollable epilepsy. From her early career as an actress and events professional to becoming a full-time caregiver and now a writer and advocate, Kelly discusses how she found her purpose amidst life's unexpected challenges.  Book: Normal Broken  and Inchstones Blog original feature in 52PWP blog

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Chapters

• 0:00 Introduction and Background
• 6:57 Finding Purpose and Healing Through Grief
• 18:15 Navigating Career Transitions and Ambition
• 20:43 Guilt, Anticipatory Grief, and Moving Forward
• 24:17 Making Meaning and Celebrating Life

Transcript

Amy Boyle (amyboylephoto) (00:00.046)
Welcome to the Speaking of Phenomenal podcast, Kelly. I'm so glad you're here. Thank you for having me. It's been a while since we've seen each other. I can't wait for you to introduce the phenomenal you to our audience. Thank you. Yeah, I am Kelly Cervantes and now a writer and author of my book, Normal Broken, about my grief journey after my daughter passed away.

So formally a caregiver to a medically complex child. Before that, I worked in events in restaurants. Before that, I was an actress. I feel like I have led five or six lives over the course of my adult life. But I feel like I am finally where I am supposed to be doing what I'm supposed to be doing.

I loved how you just said you're finally doing what you're supposed to be doing. Describe to me what that realization feels like and maybe some of the things you wrestled with to get to that realization. First, starting out with my career, I thought I wanted to be an actress. I did. I wanted to be an actress very badly. And then I realized that not having secure income was...

I have a very strong artistic emotional brain and I have an equally strong logical brain and they were constantly at war with one another. When Miguel and I got married, my husband, we wanted to start a family. He was also an actor, was working on Broadway. His career was going significantly better than mine and I decided to bite the bullet and get.

a real job and started working in restaurants and events. And I enjoyed it. I loved having sales goals. I loved being the boss. I loved that it was my income that bought us our first home. However, it still wasn't my dream job. I love restaurants, but I'm not a foodie. I always felt like I was kind of faking it a little bit, whereas my colleagues were always looking at all of the food blogs and up in

Amy Boyle (amyboylephoto) (02:18.347)
knew all of the up and coming chefs and that just wasn't, it wasn't my passion. I enjoyed restaurants. I loved food, but it was not what I was on this earth to do. When my daughter got sick and Miguel, my husband landed the role of Hamilton on Broadway for one month and then in Chicago, I was forced to leave my career to take care of the family and

support us logistically and emotionally as opposed to financially. And we were so fortunate that Miguel was in a position where he was making enough money that he could financially support us so that I could do that because being a caregiver for Adelaide, my daughter became a full -time job. And it was probably the most fulfilling job that I will ever have in my entire life, even though I never wanted to be in that position. Adelaide

had very severe, uncontrollable epilepsy seizures throughout her life. It was eventually determined that whatever was causing her seizures was neurodegenerative. And she ended up passing away five days before her fourth birthday. And when she died, I felt like I was forced into retirement from this job that I loved. However, even in that

job, I still felt like something was missing, like I wasn't doing enough because it was very easy as a caregiver to get lost in the people that I was caring for. And it was hard for me to find something that was for me, where I wasn't Adelaide's mom or I wasn't Miguel's wife, where I got to be Kelly and known for my accomplishments, which is

something that's important to me. And I used to be very ashamed of that. And I'm not going to be ashamed of it anymore. I need things that are mine. I need to be acknowledged for the things that I do. A man would never have a problem saying that, but alas.

Amy Boyle (amyboylephoto) (04:27.575)
after Adelaide died, I was lost in my grief as anyone would be. I struggled immensely, but I had started a blog during Adelaide's life writing about, called Inchstones, writing about my journey, caring for her. And after she died, it just sort of transitioned to me talking about my grief. And I discovered that I have this skill for.

putting complex emotions into words. And I acknowledged that I'm not that special. I am special in all of the ways that Mr. Rogers taught me that I am, but I am not special in that what I was experiencing or feeling was unique to me. And that was so empowering to acknowledge that because then I could write about anything because I knew that I wasn't alone in feeling or thinking what I was writing. And so I could connect with people and I could give them the words that they needed to put.

their feelings out into the world. And so it wasn't until I had gone through all of these different life experiences that I feel like I was actually able to come into what I'm supposed to be doing, which is writing, which is sharing, which is getting up on a stage and telling my story and raising awareness or raising funds or

letting people know that it's okay to talk about grief and that being a caregiver sucks and it's hard, but it can be incredibly fulfilling and rewarding and that there are all of these contradictory statements in our lives that are always going to be at battle with each other, much like my incredibly emotional brain and my incredibly logical brain will always be there. They're always going to be contradicting one another, but that's life.

that's okay. And I finally feel like I am coming into my career, coming into my phenomenol -ness, if you will. And it took me living life to get here. I thought that it would be more of an overnight thing, I guess. I don't know. I didn't think I would be 42 years old just now figuring out what I'm supposed to be doing with my life.

Amy Boyle (amyboylephoto) (06:53.567)
You hit on so many things. Like you said, all of our experiences are unique to us, but the commonality of the things in the course of our life and our lifespan are so many similarities. And so when you do find that gift, and I am so grateful for your blog because I found that way before we met and you are so beautifully articulate. You bring us into the messy, the beautiful, the hurt, but also.

as a way through living with. It's not like push aside, you know, I've to have experienced grief and being a caregiver and some people do come to you and expect you to be, well, how are you? Are you good now? And I'm like, that's a funny way of putting it good now. know, and so to see more writing, more work, more authenticity to the actual human experience is something that I'm.

very grateful to you for finding that in yourself because you know, not everyone can write, but if that's a place that someone can turn to to find comfort, it's such a great, amazing connector. And I would say one of the things that definitely draws all the guests I've had on this show is, and you've hit it perfectly, like there was more, there was something.

And that's okay. It is an ambition, but it's not like ambition bad, right? Capital A ambition. And I don't know if it's just good girl syndrome or whatever this mess is, but the fact that people like yourself have these gifts to give and we're kind of holding back, but we know that we have to go forward. And I'm thinking how many other women out there have that and

just can't get past the, shouldn't. It's not the right time or place. What would you have to say for folks that are wrestling with that feeling? It is a difficult question because I still wrestle with it to this day. I had to sacrifice my career for my family. That was what needed to happen.

Amy Boyle (amyboylephoto) (09:15.451)
And had I let my ambition take over in that moment, my family would have suffered for it. And so it is incredibly challenging to understand the time and the place for our ambition. And it sucks because I don't feel like men are forced to make that determination in the same way that women are. It's just inevitable that a lot of

household responsibilities are going to fall to us and we are going to be the grease that keeps our families going, that keeps those gears whirring. And Miguel is an incredibly supportive partner. He's very involved. But at the end of the day, I'm making sure that shit gets done. So my family needed me and so I had to put

my ambition on the side. And then I had to keep my ambition off to the side even after Adelaide died because I needed to get myself to a place of healing. I want to be careful about how I say that because I am not healed from my grief. I will never not be grieving. I will always grieve Adelaide. The difference is that

I am now in a place where I can move forward with my life and still be grieving as opposed to in the darkest days of my grief where I was treading tar. I was stuck in place. Everything else in the world was moving on without me. And I felt like I was just watching the train go by. And now I am in a place where I can carry that grief with me.

But I'm on the train. I am moving forward with the train. so until I got to that place with my grief, I couldn't acknowledge or try to incorporate my natural born ambition back into my life. And so it is, it's a tricky question and it's going to be different for every single person. It was also, my family was in a place where I, there was time for me to have ambition again and to go after that.

Amy Boyle (amyboylephoto) (11:39.735)
What I will say is that there are always smaller outlets if we look for them. For example, even while my daughter was sick, I recognized that I couldn't get a job. was not dependable. My schedule was not my own. I had no idea when Adelaide would be going into the hospital. I had no idea when Miguel would book something and completely upend any schedule that I had created. But I could volunteer because if I was volunteering,

And if I was volunteering for an organization like Cure Epilepsy, which, you know, Adelaide had epilepsy, these were people who understood, then that was a place where I could be productive. I could be ambitious amongst people who understood and gave me the space to be a caregiver and a mom first, which was what I needed to do in those moments. I will always be a mom and a wife.

first, even though there is part of me that like cringes at saying that because I love to say that I'm Kelly first. And someday I think maybe I will be again, but as long as I'm a mother with children living under my roof, I think it's probably naive at best, ignorant at worst to say that that's not my first priority. And I want it to be my first priority.

I just also really need to make space for me in whatever capacity I can make space in my life. 100 % agree with that. I'm a mom of four and even though the youngest is 21, the oldest is 28, it's still mom first. was once that title role privilege opportunity was the thing. But I hear everything you're saying. like, yep, me too, me too, too. I'm like, absolutely.

And these are things that within community and having these conversations, it's not so, we get in our own way. That's another thing we talk about a lot on the show. like, so, you know, just giving that opportunity to be with community. like that you were part of Cure Epilepsy and also are you still with the...

Amy Boyle (amyboylephoto) (13:58.829)
the Seizing Life podcast? Yeah, so still host their Seizing Life podcast. I'm still on CURE Epilepsy's board, although no longer the board chair. Thank goodness, was a lot of work. And now I also sit on the Undiagnosed Diseases Network Foundations board as well, which is another organization that Adelaide was involved with to help the rare and ultra rare shorten their diagnostic journeys. Amazing.

When it comes to the book, Normal Broken, you know, it's a grief companion, but how, in your words, what is the ultimate, what was your hope when you were writing it and what maybe what has surprised you now that people have been reading it? Yeah. My hope when I wrote it was that it's very specifically called a grief companion because I do not necessarily believe in a grief guide.

I don't think that there is one way to navigate our grief. I think we're all going to do it a little bit differently. I think that a lot of the themes are going to be similar. But we have to do it on our own and no one else can do it for us and no one else can tell us exactly how it has to be done. So what I wanted this book to be was

like a friend who was sitting with you and being like, okay, this was my experience. Take from it what you will. And hopefully that helps you. Hopefully there's pieces here that you can pull out that can help you while also recognizing that maybe someone isn't going to connect with every piece of it. But if they can get a nugget out of it that helps them.

through a particularly different part of their healing process. If it gets them to a place where they choose to start healing, because making that choice is very much a decision, we can choose to just suppress, right? We can choose to not acknowledge the grief. can choose to just live in those dark days forever.

Amy Boyle (amyboylephoto) (16:15.673)
But if this can show people that it is okay to begin healing, that they're not betraying anybody, that they don't need to hold space for guilt in healing, all of those pieces, it can help people along just by sharing what I learned and my experience, then that's incredible. And you know what? I have been

or maybe heartened by, because it was also part of my hope, was that this is not a book for just people who have lost a child. It is for anyone who has experienced any kind of grief. And I wrote it with that hope, but I was very nervous that it would still only speak to those who had experienced child loss. And one of the things that I have been so relieved to hear is from so many different people that, regardless of

the grief that they're experiencing, whether it is, you know, they're grieving a career, which I talk about in the book, because I had to grieve my career when I left that to take care of Adelaide, whether they are grieving a parent or a sibling or a friend that they have been able to find connections and had pieces of the book that spoke to them. so that was my hope, but I wasn't always confident that that was

That was how it was going to land. And it's been, it's been so great to hear that it has. I'm glad that it is become that as well, because I, again, I mean, I have very dear friends that have lost young adult children in the last few years. And it's, but also I've experienced loss of my own mother. We have all these other different things. the grief is the common thread and just again, community and beautiful stories and warmth and telling.

us all that certain things are okay as we process and to go at the speed of us, like listen to that, to listen to our own selves and to what we need. Clearly a little bit of a fangirl over here, because I think it's just, it's, it's really needed. Like, and I don't think people stop enough to go, hi, this is, you know, you're pouring yourself out in the blog weekly, daily. And, but also.

Amy Boyle (amyboylephoto) (18:39.343)
putting it all together into this package, which is this beautiful book that is a companion. It is now an extra friend. It's these things that at a time of the lowest lows of your life, you can turn to even just a chapter and feel like you're not by yourself anymore. And so I can't say enough good things about it because people do ask like, what can you do, right? You can only get so many cast rolls. You can only get in cards and stuff.

And then the phone stopped ringing and then what? So it's just another thing that's tangible for us as we navigate our own journey. And I think that's fantastic. Thank you. Thank you so much for saying that. my gosh. I wrote it so that chapters could be taken out of order so that you could read or reread a certain chapter that you need in that moment, recognizing that

The way that I move through my grief is not necessarily the same way that someone else will. so it's good to hear that. Thank you. When we start to understand, maybe we're letting go a little bit of the guilt that sometimes comes with all this, right? Did I get out of grief, Jill? Am I beyond it? Which could open up a can of worms to say, no, now I feel bad for even hoping to be done, right? When this is a

My process, this is, and to the end that you also said that it's not over, right? But we're also going forward living because we get to physically be here. We can honor and champion and do all these things. So when it comes to the guilt, what are some of like the ahas that you've personally learned? What do you like to share in that space?

So a handful of things, when it comes to the guilt of continuing to live when our loved one doesn't, or getting to live a life that our loved one won't, I often have to remind myself that grief is a very selfish emotion. And I know that sounds harsh.

Amy Boyle (amyboylephoto) (20:58.159)
But it is. And that's not, mean, clearly, I believe that we need to feel our grief and we need to process our grief. Our entire conversation has surrounded that. So I'm not saying that it's not something that we shouldn't do. However, we also have to acknowledge at the same time that our grief and any emotions that come along with it, be it guilt or

whatever, doesn't benefit anybody. It doesn't, my grief doesn't, how sad I am doesn't benefit Adelaide. It's not going to bring her back. She's not looking down on me, judging me for how much I cried today. It certainly doesn't benefit my family who is relying on me to keep their lives running. So it is necessary.

And it's not something that we shouldn't be ashamed of our grief. We shouldn't try and rush through it. However, prolonged grief is, is not benefiting anybody. I have to imagine that if I was still struggling to get out of bed five, six years later, Adelaide would be like, what are you doing? I died and you're wasting your life in bed?

Like that to me is not honoring her. want to, when people think of Adelaide, I don't want them to just think about a child who was sick. I want them to think about all of the hope and the research that her life inspired. I want them to think about this strong and feisty girl who even though she

didn't have words, had no issue letting us know when she didn't want to be held or hugged anymore, that could tell us how much she hated Baby Shark and how much she loved Frank Sinatra. Like these are the stories that I want people to remember about her. And likewise, I don't want people to remember me and be like, yeah, her daughter died and she was super sad for the rest of her life because of it. My daughter died and it forever changed me. But

Amy Boyle (amyboylephoto) (23:18.083)
I am going to choose to allow her loss to motivate me to make it mean something. I do not believe that things happen for a reason, but I do believe that we can find reason in the things that happen, that we can make reason, that we can make meaning. And so I will spend the rest of my life continuing to try and make reason and make meaning out of Adelaide's life.

That means I have to move forward. That means that I can't be stuck in a place of guilt and grief. It means I have to live and I am living for her, to honor her, to make her life mean what it can. It will never be enough. It will never, ever, ever be enough that I won't stop trying because I need to. And that gives me purpose and that gives me a reason to keep going.

Just taking that all in because it just takes you through the process of your personal story, but also shows how that's inspired you for the advocacy work that you're doing. And that is something, again, through the writing and through being a part of the different organizations. You were recently on a panel with Katie Couric. I can't wait for you to tell our audience about

that and how that going forward work is the honor, right? You are our honorees. That is, first of all, Katie Couric is just as kind and witty and brilliant as you think she is. I was just so impressed by her, by her team that she works with.

they could not have been kinder or more welcoming. I had the opportunity to speak on a panel about being a caregiver for a healthcare marketing conference. And it was such a great opportunity to share my story, to share Adelaide with a group of people who work in healthcare, be it doctors or pharmaceuticals or healthcare medical systems that can affect change, reminding them that a

Amy Boyle (amyboylephoto) (25:40.065)
A patient is more than the siloed system that a cardiologist or a pulmonologist or a neurologist sees them for. They are an entire human and they need to be treated as an entire human. And that entire human's health affects their entire family. A cardiologist is not just treating a heart, they're treating a family and reminding healthcare professionals

And I think it's very easy to get siloed and focused on these tiny specific pieces. But behind that is a family who is navigating multiple appointments and multiple medications with their side effects and the tests and everything that goes along with them. And so it was such a great opportunity to connect and to also thank these professionals for the research that they're doing because there's nothing that gives me more hope.

than research. I never want there to be another family that is in a position like we were with Adelaide, but there are every day. My hope is that through research, there is hope for those future families. And there are a few people on this planet who have done more for medical research than Katie Couric. Everything that she has done was stand up to cancer, for colon cancer. She spearhead a movement and it

was just, was absolutely incredible to be able to meet her and tell her how much I appreciate the groundwork that she's laid for so many of us, be it in journalism or medical research. It's nice that more people are recognizing the work and then hopefully giving, you we could do a whole other podcast about mental health aspect of, and for weeks and months, of what is needed in that space as well.

And thinking of HUD, your children that are home now, they're off to big school and almost into high school and my goodness, and kindergarten. What are you doing to celebrate these wonderful milestones that you're currently in? I'm just trying to acknowledge them, to recognize them. I think it is so easy, especially in this stage of parenthood.

Amy Boyle (amyboylephoto) (27:59.425)
Son is in seventh grade. Two years after Adlai passed away, we adopted my daughter who is now in kindergarten. you know, life is just, it is a full steam ahead steam train. Like it is, and I am the conductor, but we are like, we are going at a lightning breakneck pace, right? And so I think it can be very easy to get lost in

the practices and the games and the rehearsals and all of the to -dos. And so I'm trying to appreciate the smaller moments in between the inchstones, which is where the name of my blog came from, because with Adelaide, she wasn't going to meet most of the typical milestones that people mark. So we celebrated her inchstones, the small steps that she took on the way.

to hopefully someday meeting those milestones. And that is a sort of life lesson that I have carried with me to try and acknowledge all of the inchstones on the way to life's bigger milestones and celebrate them in small ways. If that's just like a piece of chocolate or an extra hug or just saying it out loud, like that was awesome.

and giving all of those smaller life moments the space that they deserve and to recognize them and acknowledge them because they are what make up a life. And if all we're focused on is the end game, we're missing so much joy and happiness along the way. Fully agree. And hopefully people are hearing that that

The small things are the big things. And we heard that a million times. But when you stop and find awe, that's one of my favorite words is like in the, what may seem is the most mundane thing, but to realize how much that affects the big picture of life and to celebrate that and

Amy Boyle (amyboylephoto) (30:08.865)
Yeah, absolutely. With chocolate or hugs and chocolate. You've got me. Let's go. This is wonderful. I'm like, yes, that should be the whole next chapter of things. Hugs and chocolate. That's the students. then one of the things you say, and I do too, is life is nonlinear and that is, that is a -okay. And I think once we get to that realization, it's, it's so humbling. And then we give ourselves some.

Space to breathe, space to grow. And it's hard to learn that lesson because in our early lives, it is linear, right? You go through elementary school and middle school and high school and maybe college or married and kids and the life, the trajectory, the traditional trajectory of life is very linear in the early, in those first two decades of our life.

maybe even three decades of our life, it can feel very linear. But at some point, an asteroid is going to land at your feet, and you're going to have to figure out how to navigate around it, or over it, or through it, or under it. And maybe that means taking a few steps back somewhere. And that linear path that you thought you had doesn't exist anymore.

But it's hard to acknowledge that it feels like we have failed in some way because we had to detour. And it's not failure, it's just life.

That's the quote. It's not failure. It's just like, absolutely. Because I say that to my children all the time. I remind myself of that all the time. it's the mystery of where we're going. You know, we were working towards things, but I think when we got together four years ago, you were saying, I'm never going to make a five year plan again. think celebrating the Inchstones is definitely the way to go. As far as our audience, there's so much more they need to know about you.

Amy Boyle (amyboylephoto) (32:21.327)
and about the work that you do. But as far as what next steps for you, I think you said there's a new book on the horizon and Yeah, new book is due to my publisher in a few months at the end of 2024, which means it will not be published until probably the end of 2025. So certainly follow along on my social medias or Substack, all of that good stuff.

to see when all of that is coming out. But yeah, still I'm hosting my Seizing Life podcast with Cure Epilepsy and writing the blog. And Miguel and I have started building a show that we are doing together. So he sings songs and tells stories from Hamilton and I pull in stories from our home life and our grief journey and how we, all of that shaped who we are today. so we did a first.

run of the show in Dallas in front of Miguel's hometown audience. And we're working on booking some more of those shows, hopefully coming to Chicago. Well, like you said, it's full circle. It's nonlinear, but it's beautiful as it is and to be celebrated. And thank you for all the work that you do and your vulnerability, because it's inspiring.

And I'm sure for everybody who does take the time to write to you to let you know, there's hundreds, not thousands, that that impact reached them. So keep going if you can, because it's so needed. And it's humbling to have followed the journey, to feel a part of your family in an extended way and to help share your story so that Adelaide's story and your entire family

goes on and continues to do wonderful work. Thank you so much, Amy. It has been so great to know you all these years, and I just appreciate you always being willing to help me share Adelaide with the world. Absolutely. Wouldn't have it any other way.