14: Kelly Cervantes on Grief, Resilience, and Leaving Well
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, Adelaide. Since Adelaide’s passing, Kelly has continued to write candidly about her arduous and, at times, contradictory grief journey.
She has been published in the Chicago Tribune, the Chicago Sun-Times, and Cosmopolitan, as well as quoted in the New York Times, CNN, and People. She is the current board chair for the nonprofit CURE Epilepsy and also hosts their biweekly podcast, Seizing Life, where she interviews scientists, doctors, and individuals affected by epilepsy. Kelly resides in Maplewood, NJ, with her husband, Miguel Cervantes currently starring in Hamilton on Broadway, their children, and their dogs, Tabasco and Sriracha.
“I think change and grief and resilience, these words kind of get clustered together, but I think it’s just so important to recognize that resilience isn’t just moving forward. It isn’t just pushing through. It’s doing the work so that you can continue to be resilient down the road.”
Additional Quotes:
On one end of the spectrum, grief is just pure love. It is the love that you can't physically express. And then on the other side grief is just change. It is the resistance to change.
Leaving well means moving forward while remembering. Because I think that we have this idea of leaving, and that somehow that gets synonymous with forgetting. We're leaving, and so we have to leave something in the past, and we have to move forward. But that's not what leaving well means. Leaving well, to me, means that yes, you are moving forward. Because we don't have a choice. Time trudges forward whether we want it to or not, right? But when you leave well... You're remembering what happened in the past, and you're carrying that forward with you.
I'm not trying to deny my grief. I will never get over my grief, whatever that means. It will always carry with me. Those experiences will carry forward with me. They just get folded into this new version of me. I'll never be the same Kelly that I was 10 years ago. I am a new Kelly. Hopefully a better Kelly.
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You know, I think change and grief and resilience, these words kind of get clustered together, but it, I think it's just so important to recognize that resilience isn't just moving forward. It isn't just pushing through, it's doing the work so that you can continue to be resilient. Down the road,
this is leaving well, where we unearth and explore the realities of leaving a job role project or title with intention and purpose and when possible joy, I'm Naomi Hathaway, your host, I will bring you experiences and lessons learned about necessary endings in the workplace with nuanced takes from guests on topics such as grief.
Leadership and career development braided throughout will be solo episodes, sharing my best practices and leaving. Well framework expect to be inspired challenged and reminded that you too can embed and embody the art and practice of leaving. Well, as you seek to leave your imprint in this world, 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, Adelaide. Since Adelaide's passing, Kelly has continued to write candidly about her arduous and at times contradictory grief journey. She has been published in the Chicago Tribune, the Chicago Sun Times, and Cosmopolitan, as well as quoted in the New York Times, CNN, and People.
Kelly is the current board chair for the non profit Cure Epilepsy and also hosts the Their bi weekly podcast, Seizing Life, where she interviews scientists, doctors, and individuals affected by epilepsy. Kelly resides in Maplewood, New Jersey with her husband, Miguel Cervantes, who is currently starring in Hamilton on Broadway, Their Children, and Their Dogs, Tabasco and Sriracha.
Kelly, as we begin, can you tell us as much or as little as you'd like about Adelaide? Yeah, absolutely. Thank you so much for asking. I love this question and to talk about her Adelaide. She was feisty, feisty little thing. She was nonverbal and nonmobile, but that did not stop her from getting her point across ever.
Uh, it's amazing how communicative someone can be when you pay attention to body language and, and eye gaze and all the different other noises that someone can make. Uh, she. Loved cuddling right up until she didn't. And then she would like swat you across the face to say, give me space. Uh, she. loved being read to and our home nurse who we had for about the last two years of Adelaide's life discovered that Adelaide had an affinity for Frank Sinatra, of all people, of all music.
She would kick and scream and squirm if there was children's music playing, like Baby Shark, hated it. You put on like some old blue eyes crooning Frank Sinatra and she would just totally chill out. She might even open her eyes. She was so often overstimulated that she would close her eyes. She wasn't sleeping, but her eyes would be closed.
You'd play Frank Sinatra and she would start to open her eyes and look around. She was so funny. She would pretend to be asleep when doctors would come into the room, hoping they would leave her alone. She was, she was funny. So she... Was diagnosed with epilepsy at seven months old and then infantile spasms, which is a particularly devastating form of Epilepsy of pediatric epilepsy over the course of her life.
We just kept adding different diagnoses and We did every test under the Sun to try and figure out what was causing all of this Could never get a solution. And then about six months before she passed, it was determined that whatever was causing all of this was neurodegenerative. And there just wasn't anything that the doctors were going to be able to do to help her.
And at that point, My husband and I made the decision to start pulling back treatments. We were now just going for quality of life. And almost immediately when we made that decision, Adelaide let us know that she was... Ready to go. And so we entered hospice with her in late August of 2019. She passed away mid October of 2019.
She fought right up and right up until the end when she let us know that. That she'd had enough. I love that you said at the very beginning around paying attention and listening and noticing. And so I am thankful to you for you and your husband's willingness to listen and pay attention. It's really impactful.
The time of this recording. You are squarely in the space of some meaningful dates of both Adelaide's birth and her death, which you've said on social that you call hell week. What have you learned about facing anniversary dates and what would be your wisdom to others that are experiencing the same? Oh, they suck.
They like super, super duper suck and there is no avoiding them. And so what I have learned is to just let them suck and find the simple and small joys where you can. Adelaide's Death day is October 12th, her birthday, the 17th, and so I, I try and allow the 12th to be my day of mourning and my day of remembering, not that I don't remember her every other day, but I, I, I block my calendar and I just let myself sit in.
In the grief, I try to make her birthday a little bit more celebratory this year. I went shopping for clothes for the book tour. I try and do things that I enjoy and fill the day with, with simple things that bring me joy. And then we always have a birthday party for her. So we are having a birthday party this weekend, um, where we invite local friends who knew her, some who didn't, we have some family come in town and we just.
Celebrate her, remember her. And that is that is a joyous and fun thing. But no matter how much I plan for these days, there's still unexpected emotions that are gonna surface. And just I try and let the day be what it's gonna be. Keep my expectations for myself and others pretty low. And just survive the day.
It's 24 hours and then it's over. The anticipation of them is typically far worse than the day itself. I'm curious what you would say your three words are that you would use to describe your relationship to change and to grief. And it may be that those three words have changed for you, um, in the past couple of years.
Resilience would be one, but I, resilience for me is sort of double edged because I think many people only see resilience as Overcoming something or being strong enough to push forward and what you don't necessarily see. Is that on the flip side of resilience is that you still have to do the work you can push through you can put one step, one foot in front of the other.
But if you don't do the work and process that change so that you can be resilient. It's going to come back and bite you later in the future. So, something that I hear all the time is my son. With seven when his sister passed away and people are like, Oh, my goodness, kids are so resilient, he'll be fine.
And I'm like, kids are resilient, perhaps, but that doesn't mean that they're that adults are. And if we don't address the grief and the trauma that he experienced around her life and death. He may not show signs of it affecting him now, but it's going to affect him as an adult. You know, I think change and grief and resilience, these words kind of get clustered together, but it, I think it's just so important to recognize that resilience isn't just moving forward.
It isn't just pushing through, it's doing the work so that you can continue to be resilient down the road. Another. Word that comes to mind when I think of grief and change is permission permission to allow yourself to grieve permission to allow yourself to set boundaries as you're grieving change, and then permission.
To allow yourself to be okay and to feel joy again, that there are all of these steps that you go through along the way that we have these preconceived notions. about how we accept change or what that looks like, whether it's the Kubler Ross brief stages or whatever it is, right? But the, the important piece along the way is that whatever we are feeling, whatever the next natural step forward for us as individuals is, we have to give ourselves permission to feel that and to.
Take those steps. And even if it is a change that we have resisted with every fiber of our being at some point, you do become accustomed to it and allow giving yourself permission to feel okay in whatever change this new normal has brought on. The other word that comes to mind for me around change and grief is Patience.
Patience for yourself, but more importantly, I think patience is For the people around you who are also experiencing the same change and the same grief that comes with that change, because we all process grief and change differently. My husband and I both lost our daughter, the same person, but the way that we grieved her was radically different.
And there we've had to have a lot of. Communication and a lot of discussions to understand each other and what our individual needs are and how we can or cannot fill the needs of the other and so giving permission for other people, the people around you to go on their own journey and experiencing it and recognizing that is going to be different.
It not, it might be different. It will be different than what you are experiencing and so having patience for other people's journeys. Is is equally as important as. Having patience and giving permission to yourself so that you too can be resilient in the future. So that leads right into my next question.
You as the mama in the household and the wife, um, talking about the patients that need that's needed for others as they're processing grief. I'm curious what you would say around how to Speak with each other when facing the death of a loved one that we know that there's no magic words But what would you say that you wish most you had heard during your grief journey?
So I think it's different for people who? Knew me and knew Adelaide and people who I'm perhaps meeting for the first time after all of this When I'm meeting someone new for the first time The question that I love the most is the one that you started the podcast off with Which is, what was she like?
And I think people are afraid to ask that because they think that they're going to bring up some sort of sadness. They're going to remind me that she's dead, and you know, I'm like, I think about her every moment of every day, you're not going to remind me of this fact. But I don't know anyone, particularly any parent, who doesn't love to talk about their children.
Alive or not, it's just, it brings so much joy to my heart to be able to talk about her and the things that she loved and how silly she was. I think that people need to remember that. There's nothing that you can say that is going to make me more sad or miss her more. Other people just don't have that power.
Over, over an individual and their grief for the people that knew us and knew her it is. The little things that make the biggest difference. I walk into a friend's house and they have a picture of her on their bookcase. So that I know that they're remembering her. Adelaide's nickname was Adeladybug. And her, all of her bedrooms that she ever had were always decorated with ladybugs.
And that ladybugs are like her symbol. So people will text me a picture being like, Hey, I saw Ladybug today, thought of you and Adelaide. It warms my heart to know that people are remembering her because they think that's so many people, no matter what loss you're grieving, that they're afraid that people are going to forget that they're going to move on and move forward.
And so those little reminders that people do still remember that. That means the world to anyone grieving. I actually looked to see if I had Ladybug earrings. I don't, but there's little butterflies in these. I love it! So I don't want to minimize the big complexities around death by comparing them to workplace transitions, but there are some pretty big grief realities that come with the necessary endings of work and our identities to work.
Are there any similarities that you've drawn as you're beginning to re enter the world of work yourself? You know, it is so fascinating. When I was doing the research for my book and I'm googling and, and do it and trying to find More information about the grieving stages or how other people have applied the grieving stages to life and the thing that kept coming up over and over and over again was business managers using the Kubler Ross grieving stages in the workplace.
And in fact, I. I think that's probably the best place for them. I think that they can be overwhelming for someone who is grieving great loss, but they are magnificent resource for anyone who is adjusting to change and grief in the workplace. You know, it is. Going through these various stages of being in denial and, and finally coming to a place of acceptance with this change and at the end of the day, grief is just so multifaceted, right?
On one end of the spectrum, grief is, is just pure love. It is the love that, that you can't physically express. And then on the other side, It grief is just change. It is the resistance to change. And I think in a workplace when you are are faced with change via procedural or starting a new job or reentering the workforce after years and years out of it.
You are grieving, maybe the love piece doesn't come into it, but this other facet of grief does, and that is the change and going through these steps and allowing yourself the permission to feel, but also forcing yourself to progress through those stages, because you can ideally separate some of those more extreme emotions.
Can you talk a little bit about your book and the title, Normal Broken? I would love for you to share. Well, Normal Broken right here, and I have a little ladybug on the cover. So it is... Meant to be a grief companion. I found that when I picked up books that called themselves grief guides, I felt a lot of pressure that I was supposed to do grief a certain way.
And I quickly realized that we all grieve differently. There are certainly common threads. There are commonalities that everyone experiences. But at the end of the day, our journeys are so different. What we are grieving varies. All of these things, what I wanted at the end of the day was someone to just sit in the dark with me and, and make me feel a little more normal broken.
We feel broken by loss. We feel broken by change and It can be incredibly isolating when we don't feel like we currently, when we fit into our normal social structures, be that after the loss of a loved one, or in, in a work environment where you feel like you're a square peg trying to fit into a round hole after some sort of shift or change, and you need that companionship, you need someone to stay And I've been there, I've experienced this, and so that is my hope for this book, is that I share my personal journey, I share my mistakes, I shared what I learned, and the chapters are broken down in a way so that it is when you don't want to get out of bed, when you're facing an anniversary or other date, when you're ready to be okay.
So the idea being, you can take these chapters out of order. If you go from 3 to 10 to 7 to 12, Then you do you and that's what works for you. Your grieving journey doesn't need to look like mine so that the book can meet you where you are like a friend might. And so that has sort of been my hope and my goal for this.
I also have some writing prompts at the end of each chapter because I don't think there's anything that helped me more during my journey. Then writing, getting words out of your head and onto paper or a keyboard, as it were, there's, for me, that was more valuable than, than talk therapy, than, than anything.
And I'm huge proponent for therapy. I love my medications writing was everything for me. And so I, again, recognize that it might not work for everyone, but I encourage everyone to just. Give it a try and see what happens. Our thoughts are a lot less scary when they're confined to letters. I love hearing you talk about the book and the creation of it because it just feels so authentically real.
And Just like, you know, I'm hopeful that it does land in the world the way that you hope that people feel like maybe you're sitting next to them and guiding them through, like you said, as a friend would. That's really, really special. Thank you. What are you walking towards or hoping for as you navigate book tour and the release of the book, and then also continue processing, Adelaide.
Always, always. This is a terrifying question for me because during Adelaide's life, I taught myself not to look toward the future. I was very much present focused and that was new for me. I had to train myself to do that prior to Adelaide. Getting sick. I worked in events, uh, for, uh, Tom Colicchio restaurant in New York City, selling and coordinating events.
Everything I did was future focused. It was sales driven. I, you know, event plan. I mean, I was 100, I had a five year plan. I, it was all there. And then Adelaide is diagnosed with epilepsy the same week that Miguel books, Hamilton. We find out that we're moving to Chicago. So I quit my job and. I am all of a sudden a stay at home mom slash caregiver slash nurse slash therapist slash all the things.
Not part of my five year plan. So it's interesting to sit here now with this book coming out for the first time in almost eight years. I have something that is mine. I am starting this new career. Where I can help financially provide for my family again, and it is so exciting and it is so rewarding and that Adelaide is a part of kickstarting all of this that it is inspired by her that it wouldn't be here without her.
Granted, I wish that she hadn't had to have gone through everything that she did, but this is, it's so meaningful to me to be back in this space where I get to be Kelly Cervantes. Again, and not Adelaide's mom or Miguel's wife or Jackson's mom, and it is, it's exciting, but it is also extraordinarily terrifying.
And so I'm trying to learn from that and take these baby steps, inch stones, as I like to call them and allowing myself to dream. And you know, hope that this book is wildly successful, but also just saying, this was an amazing experience. I loved writing this. I would love to write another book. I want to, I love public speaking.
I love connecting to people, connecting with people. I hope to do significantly more. Speaking at, at corporate events, at fundraisers, at wherever I can to share this story, to share my experiences, to share what I've learned and connect with other people and, and hopefully teach them something, but also connect with them and so that they can feel a little more normal and whatever their brokenness looks like.
Today, and so I'm not quite at a 5 year plan yet. I don't know that I ever will be because if there's 1 thing the last 8 years have taught me, it's that I have no idea what the next 8 years. Will bring, but I'm starting to dream and I think that that's a pretty great 1st step. I love that, especially thinking back to when you were talking about a necessary part of your grief journey has been knowing that it's okay to also have joy.
And so dreaming feels so aligned with that as well. It's really exciting. Is there anything shocking or surprising that you'd like to share about grief and loss? We're just not that special. There is nothing that any of us have ever felt. That someone else hasn't also felt. Now, did someone have their daughter get diagnosed the same week as their husband landed the lead role in a blockbuster musical, quit their job, move halfway across the No.
That is my personal story. That is not replicable. I hope not in, in someone else's life, however, the way that I felt resenting Miguel because he got a standing ovation every night on stage and I was, you know, changing diapers and G tube feeds and counting how long seizures were lasting. That is real.
Having my identity. As a working woman stripped from me so that because I had to be a caregiver and take care of my family, that is real. Other people have experienced that. Other people have experienced loss. They have experienced being afraid of grocery stores. I hate grocery stores. They cause me incredible anxiety.
Come to find out that is super common in grief, that for whatever reason, going grocery shopping is particularly challenging for a lot of people after they lose someone. You may think that whatever your, your triggers are, whatever your reactions are bizarre, that, that you, no one else Feels this way or has experience they have, they are out there.
We are just not that special. Perhaps in the way that Mr. Rogers said we are special. In that way, we are certainly all very, very special. But when it comes to our experiences, when it comes to the way we handle them and we feel about them, we're not. And in that, I hope people find community. And that it allows them to be honest with the people who love them and who care for them.
Because people will often say to me that they think I'm so brave for sharing my experiences. And I'm like, why? I share it. And then, you know, 30 to 100 people come back and they're like, Oh yeah, me too. That's not being brave. That's just being honest. And, and it. It helps others, and it helps me tenfold. I think there's something so beautiful about that signaling and that sharing, because it does let someone know if they can also say, me also, and be safe with the story sharing.
And then I do think that being honest helps others normalize their own honesty. There's the ripple effects of that are huge, so I'm really glad you said that. Okay, so my last question for you is what does leaving well mean to you? Leaving well means moving forward while remembering because I think that we have this idea of leaving and that somehow that gets synonymous with forgetting.
We're leaving And so we have to leave something in the past and we have to move forward, but that's not what leaving well means leaving well to me means that yes, you are moving forward because we don't have a choice time trudges forward whether we want it to or not right but when you leave well, you're remembering what happened in the past and you're carrying that forward.
I'm far healthier and happier because I carry Adelaide forward with me. I'm not trying to repress those memories. I'm not trying to deny my grief. I will never get over my grief, whatever that means, it will always carry with me. Those experiences will carry forward with me. They just get folded into this new version of me.
I'll never be the same Kelly that I was 10 years ago. I am a new Kelly, hopefully a better Kelly. Hopefully that's, you know, an improved version. Leaving well just means moving forward with all of our memories and learning from them and becoming new, better versions of ourselves. Kelly, thank you for sharing about Adelaide and your journey and about the path to normal broken being out in the world and helping.
One more toolkit and resource for normalizing grief and sharing our stories. I appreciate you. Thank you so much. This was lovely to learn more about leaving well and how you can implement and embed the framework and culture in your own life and workplace. Visit naomihattaway.com. It's time for each of us to look ourselves in the mirror and finally admit we are playing a powerful role in the system.
We can either exist outside of our power or choose to decide to shift culture and to create transformation. Until next time, I'm your host. Naomi Hattaway, and you've been listening to Leaving Well, a navigation guide for workplace transitions.