Author event! Kelly Cervantes & Miguel Cervantes
[0:00]Tonight, I played the role of Kelly's husband in another life in another life in another life
[0:09]I played a role that always in her Hamilton on Broadway for about eight years
[0:15]performances
[0:17]Lin-Manuel Miranda said on my last show. He said
[0:21]The only person who's been Hamilton left in the yell is the actual guy. I was in her Hamilton himself
[0:27]So Guinness Book of World Records was at my last show. No, that's a I'm lying. That's not a real thing
[0:33]That didn't happen, but it was a it was a very amazing
[0:37]Not a song for myself and a great journey in the show
[0:40]But enough about that right now. Let's have a sing along. We're never a little quick sing along
[0:44]Has anyone seen Hamilton?
[0:47]Has anyone is anyone not seen Hamilton?
[0:51]Yeah, yeah, come on
[0:53]There we go. What'd you do during COVID it?
[0:57]Other things other things so listen he's we're gonna do. I'm gonna sing we're gonna sing this whole song
[1:02]When I get to your point, I'm gonna I'm gonna point you and just sing out the next line, okay?
[1:06]It's very simple right because like this
[1:09]Well the word got around they said this kid is insane man took up a collection just to send him to the main land
[1:15]Get your education. Don't forget from what you came in the world gonna know your name
[1:20]Oh
[1:22]There it got there it is
[1:26]Right it was so slow a little we're a little slow on the uptake there
[1:29]But but so those so the words we're looking for are what's your name man?
[1:35]What's your name man, and that was a good rehearsal all right?
[1:42]All right, so that's yeah, that's let's try it again like Broadway
[1:45]The rehearsal if it's terrible brought the opening night goes great. Here we go
[1:48]Well, the word got around they said this kid is insane man took up a collection just to send him to the main land
[1:54]Get your education. Don't forget from what you came in the world gonna know your name
[2:00]Now we're talking now we're talking and then I will say
[2:04]Alexander Hamilton
[2:06]My name is Alexander Hamilton
[2:09]And there's a million things I haven't done
[2:11]But just you way just you way
[2:16]Well, two, three, four, one, whoa
[2:28]Whoa, whoa, whoa, whoa
[2:34]Whoa
[2:36]Yeah, I imagine that so much it feels more like a memory once it gonna get me in mostly
[2:41]Seventy to head of me if I see it coming you are going up to a letter T isn't like a beep without a melody
[2:46]See I never thought I live past 20 where I come from some good half as many as anybody
[2:52]Why wouldn't it be fast and we laugh each for a fast we have to make this moment last and that's plenty trash that
[2:57]This is not a moment. It's the movement. We're all the hungry as brothers, but something to prove when those opposed us
[3:02]We take an honest name we roll like Moses claiming our promised land and if we win our independence
[3:08]Is that a guarantee of freedom for rock ascendance or what the blood we shed again and endless cycle of vengeance and death?
[3:14]We're no defendants
[3:16]Let me tell you what I wish I'd known when I was young and drained of glory
[3:21]You have no control who lives who doesn't tell us a story. I know that we can win
[3:27]I know that greatness lies are you but remember from here on in history has it's
[3:35]It's all you, whoa, whoa
[3:41]History has it's all you, whoa, whoa
[3:49]Whoa, whoa, yeah
[3:53]I'm path visually waiting on passion at this fashion every expectation every actions at the creation of a laughing in a place of casualties and sorrow
[4:00]The first time I'll be the past tomorrow and I am not doing away macha
[4:04]I am not doing away macha
[4:06]Hey, you're one just like my country. I'm done scrappy and hungry and I'm not doing away macha
[4:11]I am not doing away macha
[4:13]I am not doing away macha
[4:15]We're going to rise up, rise up, rise up, rise up, rise up, rise up, rise up
[4:24]Hey, you're a somber, take the shot, take the shot and I am not doing away macha
[4:28]Don't do it away macha
[4:30]Thank you very much now
[4:39]If you come and please come and come take a seat, come on
[4:44]Come on down, if you know the music of Hamilton you know that that is not how that song goes
[4:53]It was actually a mix, a mashup of three songs.
[4:57]I was here in Hamilton, my shot,
[4:58]and he's ready to size on you in the next one.
[5:00]that song is a ham jam. We're serving ham jam after this. But the reason I
[5:07]think that song is so that you all pay lots of attention. I'm like the shiny
[5:11]object to point you all on the right in the right direction of the reason
[5:14]we're really here to celebrate a years and years and years-long journey by an
[5:19]amazing woman who I get to call my wife. So please welcome to this lovely
[5:24]table. Thank you very much. Thank you all for coming out tonight. It means so
[5:36]much to me. It really, really does. Yeah, this book is years in the making. I actually
[5:42]started writing the luckiest before I wrote my first book, Normal Broken, and that I
[5:50]didn't. The first version of it, I think, was more therapy for me just to
[5:55]like get all of these different pieces of my life out onto paper. And then the
[6:00]second version I took a stab at after Normal Broken came out, but it's still like
[6:05]the structure of it wasn't gelling. And then I came across a quote from Maggie
[6:10]Smith in from her memoir. We could make this place beautiful. And in that book
[6:16]she said, we are all nesting dolls hearing the previous versions of ourselves
[6:20]inside of us. And it just, it struck me so deeply because I often think of my
[6:28]life in the different subsections. I could dice my life by the different cities
[6:34]that I've lived in, by the different careers I've held, by the different
[6:38]compositions of my family. And I see all of those layers. And there is, there
[6:48]are a lot of things that have happened in my life that I wish hadn't of, not least of
[6:52]which my daughter being sick and passing away, but even amidst all of the trauma and
[6:58]the trials and the joy. I get to this place in my life where I am now, and my life
[7:06]is actually quite beautiful. And it has taken me a while to reconcile the
[7:15]hard with the beautiful that I get now, but I also realize that I don't get the
[7:20]beautiful in my life now without everything else that came before. I don't get to
[7:25]appreciate this life. I don't get to be this person. I don't get to look at the
[7:30]world the way that I do without having experienced and gone through all of the
[7:35]previous Kelly's to get to this Kelly. And so that was the structure that I ended up landing
[7:41]on for the luckiest where every chapter is this different layer of my life that whether
[7:47]a lesson was learned or it was just like a deep scar tissue is formed, you know, whatever
[7:54]the that moment was in my life. It's still created and built and brought me to where
[8:01]I am today. So I'm actually going to read the introduction to the book because I think
[8:08]that sets it up quite well.
[8:11]There we are. Introduction. My favorite day of the year isn't my birthday, Christmas
[8:21]or any other holiday for that matter. I can't even predict when it will occur. Typically,
[8:27]it's a day in March or April, one of the first days when I can step outside in a t-shirt
[8:31]or just a light jacket. The sun is shining and my light deprived skin hungrily absorbs
[8:37]the vitamin D. This is something that happens not in California. We have seasons and when
[8:45]we crave the sun and the sun comes out and you're like, ah, just for all of you people
[8:51]who are non-california. All of you Californians understand that. Growing up in the Midwest
[8:56]and spending most of my adult years in the Northeast, I know pleasant weather at this time
[9:00]of year is not yet permanent. A late April snowstorm is always possible. A tulip survival
[9:06]is as much a credit to the gardener's skill as the weather's temperament. But that only
[9:11]makes this first sign of spring, this whisper of summer, that much more precious. To indulge
[9:17]in such a day is a privilege I don't take lightly. My fortune at being able to do so only
[9:23]adds to the day's wonder. I began celebrating days like these in my college years in Boston,
[9:29]bucking my rule-following ways to play hooky from class and walk the freedom trail or sneak
[9:34]into a game at Fenway Park, which was something you could do before 9-11. They would open
[9:39]up the gates at the Green Monster after the seventh inning and you could just walk right
[9:45]on in. And then 9-11 happened and they wouldn't let you do that anymore and that was very
[9:50]disappointing for my college life captain Jack. As my responsibilities have evolved so
[9:59]have the weight.
[10:00]I observed this day, years have gone by
[10:02]where I barely noticed it at all.
[10:04]Have you been outside today yet?
[10:05]It's beautiful, my husband says,
[10:07]leaning against the door to my office.
[10:09]I look outside at our sun soak New Jersey driveway,
[10:12]the first of the perennial wild pansies
[10:14]sprouting at its edges.
[10:15]This will not be one of those years.
[10:18]Vanessa, wanna go on an adventure to the park?
[10:20]I ask my four-year-old daughter.
[10:22]We find a path to explore.
[10:24]The creek we walk by is full from the recent rain
[10:26]and lined with trees that are beginning to flower.
[10:29]Pink buds dotting their branches.
[10:31]We took topest turtles, next out stretched toward the sun,
[10:34]and watched red-breasted robins
[10:35]feast on bug buffets, and it's the tall grasses.
[10:38]Vanessa skips and twirls several feet ahead of me
[10:41]until she comes across a playground in a clearing.
[10:44]Mommy, I've never been to this playground before.
[10:47]She drags me across the wood-chipped strewn ground
[10:50]as excited as though we've stumbled upon a secret garden
[10:52]or magical kingdom.
[10:54]The various play structures are crawling
[10:55]with children of all ages.
[10:57]From those just learning to walk to middle schoolers,
[10:59]avoiding home in the studies that await them.
[11:02]Most of the adults present are seated on the weathered wood
[11:05]and benches surrounding the playground.
[11:07]Those with younger and less coordinated children
[11:09]are shadowing more closely behind them
[11:11]as they learn to climb, spin, and slide.
[11:14]Ready to catch them, should they fall?
[11:16]Within minutes, Vanessa has found a new best friend
[11:18]and is two courses into a tea party.
[11:21]I take a seat on an empty bench within sight of Vanessa
[11:23]and work hard to stay in the present.
[11:26]This day is too beautiful.
[11:28]This future memory, too sweet,
[11:30]to allow the ghosts and what ifs of my past
[11:32]to take over my mind.
[11:34]Vanessa may never have been to this playground before,
[11:37]but I have.
[11:38]It's been nine years and a lifetime
[11:40]since I watched my now 11-year-old son
[11:42]to huddle through these wood chips.
[11:44]How naively hopeful I had been for a future
[11:47]that was never guaranteed.
[11:48]I close my eyes and ground myself in other sensations,
[11:52]the hard and even earth beneath my feet.
[11:54]The slight breeze on my skin, children shouting,
[11:57]swings creaking, suddenly self-aware,
[12:00]I open my eyes and scan the other mothers and caregivers,
[12:03]wondering what they see in me while reflexively assessing them.
[12:07]Perhaps it's my introspective state,
[12:09]but in each of them, I find a bit of myself
[12:12]in the hovering mother forever wanting to keep her child
[12:14]in a protective bubble.
[12:16]In the working mother, taking these minutes to respond
[12:19]to just a few more emails,
[12:21]eternally locked in the cystophine struggle
[12:23]toward work-life balance.
[12:25]In the lonely mother, anxiously making eye contact
[12:27]with any adult who were holding her gaze.
[12:30]Their role as mother is most visible in this setting,
[12:32]but I know they are more than their relationship to others.
[12:35]I try to imagine what I don't see, what I can't see.
[12:39]The people they once were,
[12:40]their prior selves nestled at various depths below the surface.
[12:44]The freshly independent adolescent navigating
[12:48]the adult world with the grace of assembling toddler.
[12:51]The increasingly confident, young professional,
[12:53]negotiating the corporate world just as she once steered her way
[12:56]through the social hierarchy of her high school's hallways.
[13:00]The grown woman struggling to let go
[13:02]of the false narratives she had absorbed as truth.
[13:06]The grieving woman forever reconciling her before and after,
[13:10]her luck and misfortune.
[13:12]I wonder, are we lucky if we escape life
[13:15]with soft skin and minimal layers?
[13:18]Are we lucky to have the battle scars
[13:21]that show a life of survival and meaning?
[13:25]I don't actually know any of these women's stories,
[13:27]and they don't know mine.
[13:29]My perceptions are a self-reflection
[13:31]of my own past identities, experiences, and relationships.
[13:35]Once upon a time, while sitting on one of these very park benches,
[13:39]I had planned for a life very different from the one I now lead.
[13:43]For years, I felt that life had been stolen from me,
[13:46]but it was never mine to begin with.
[13:49]Control over anything beyond what we can emotionally
[13:52]or physically manipulate in the current moment
[13:55]is perhaps life's grandest illusion of all.
[13:59]A breeze wrestles the tree leaves,
[14:00]bringing with it a familiar chill.
[14:02]I'm surprised to see how low the sun now hangs in the sky.
[14:05]Both are reminders of how fleeting and precious
[14:07]my favorite day can be.
[14:10]Anessa, it's time to go, sweetie.
[14:13]Anessa resists running from me,
[14:15]fully in the present without thought or concern
[14:17]for what is to come or what has come before.
[14:20]I begin to walk away from the playground
[14:22]a signal to my willful preschooler
[14:24]that I am serious about leaving.
[14:26]Mommy, she yells from behind me.
[14:29]They turn and smile, waiting for her to run up to me.
[14:33]She flips her hand into mine,
[14:34]and I give it a reassuring squeeze.
[14:36]As we head back past the birds,
[14:38]the budding trees and the turtle-lined creek,
[14:40]I remind myself how too often
[14:42]I fail to appreciate the beauty around me,
[14:45]but not today.
[14:47]This almost warm, favorite, lucky day.
[14:51]Thank you.
[14:52]Thank you.
[14:52]Thank you.
[14:53]Thank you.
[14:54]Thank you.
[14:55]Thank you.
[14:56]And now I bring my husband,
[14:58]Miguel Cervantes, back for a little comment.
[15:00]conversation, a little chitty chat, well, so this is the
[15:07]bridge version. This is the transition song, right?
[15:12]Did the Adoja what to say to you? You have my eyes, you have your mother's name when
[15:27]you came into the world you cried and it broke my heart. I'm dedicating
[15:36]every day to you. Domestic life was never quite my style when you smile. It
[15:44]hung me out, I fell apart, and I thought I was so smart. You will come with age with
[15:51]my own nation. We'll feed and fight for you. We'll make it right for you. If we lay
[15:57]as strong enough foundation, we'll pass it on to you. We'll give the world to you and
[16:04]you'll blow us all away. Someday, someday. Yeah, you'll blow us all away. Someday, someday.
[16:19]Now, if you go to my Instagram, you will see a video of our son who is now 13 years
[16:29]old seeing that song with his dad. He said, I'm going to come on the book tour when you're
[16:33]right. He was very pissed. We live in Maplewood, New Jersey, and we did the first stop on
[16:40]the tour with the people. He got up and sang that song with his dad and it was just like
[16:46]the sweetest thing ever. He was like, that was actually really fun. I think we were pretty
[16:53]good. I think I should go with you. Kelly. Yes. Let's talk about the title. Oh, luck is.
[17:05]Yeah. Now, we all know that probably is talking about me and our marriage. The fact that
[17:12]I get to, you get to, I messed it up. I messed it up. You messed it up. I messed it up.
[17:16]I messed it up. You didn't have me around. But other than that, tell us, what does this
[17:23]mean? Yeah. Well, luck is a concept that I have long thought about and struggled with and
[17:30]tried to make meaning of in my life because I do feel like I had a lovely childhood that
[17:37]was very secure and stable. And I think actually gave me the foundation that I needed
[17:41]to be able to emotionally respond to what would come in my adult life. But because of that,
[17:48]I always felt like I was so fortunate and so lucky. And then, you know, you proposed while
[17:54]singing the luckiest by Ben Folds. So there was that piece. That's right. That's right. See,
[17:58]it is because of you. Which just sort of gave me a really fun through line to pull through the
[18:06]book and reflect back on. But I, and there's a moment where I talk about it in the book where
[18:16]we were sitting. So Miguel played Hamilton for four years in Chicago. And during that time,
[18:24]our daughter was very sick and passed away. But I would post these pictures on social media of
[18:34]us at the 50 yard line because you're seeing the National Anthem at the Monday night,
[18:39]Chicago Bears football game or throwing out the first pitch at Wrigley Field or he's on the
[18:43]front cover of Chicago magazine. It was gorgeous picture with the Manuel Miranda. And people see
[18:49]that. But what they didn't see behind the scenes is me leaving the hospital to go watching
[18:54]throughout the first pitch and leaving Adelaide in the hospital for the first time by herself
[18:58]with like an entire nursing staff. But like as far as I was concerned she was on her own.
[19:02]And then at the Monday night football game, I'm texting with our babysitter who has to be a nurse
[19:08]about how many seizures Adelaide has had since I left the house. Or, you know, I see the magazine
[19:16]with you and Lynn on the magazine rack at the pharmacy as I'm walking out with the latest
[19:21]anti seizure medication, which probably isn't going to work. And so there was this wild duality
[19:27]that so many people were unaware of. And then it sort of all came to a head for me. It was
[19:38]so we moved back to New York. They offered Miguel Hamilton in New York and then the pandemic happens.
[19:44]And then it's the first performance after Broadway has reopened after the pandemic. And I'm
[19:50]sitting in the audience and I have Jackson our son next to me. Then on the other side of me is
[19:55]like, I don't know her, but she's like some musical theater student.
[20:00]and she is just like over the moon to be there.
[20:02]And she's so excited.
[20:03]She realizes that Miguel is my husband
[20:05]and then she that just like sets her off with him more.
[20:07]And she's like, oh my goodness,
[20:09]you guys are just so lucky.
[20:11]And in my head, I was like,
[20:13]my daughter died two years ago.
[20:15]I am not lucky, you shut your mouth.
[20:18]I said a lot less nice words than I am.
[20:23]And I, like at my like vitriol at being called lucky
[20:28]was so intense.
[20:29]And so I really struggled with that.
[20:33]And ultimately, through writing this book,
[20:36]came to this realization that this concept of luck
[20:40]and what we determined is lucky is really
[20:43]so much a face-on perception, right?
[20:46]It is based on what we allow people to see
[20:49]in those little squares on Instagram.
[20:52]It is based on the moment of time that we're looking at
[20:55]in that theater after Broadway reopened,
[21:00]after the pandemic.
[21:01]It is all based on what we see,
[21:05]what we're allowed to see in the timeframe
[21:07]that we're looking at.
[21:08]And so I think that we can really,
[21:11]it's all about how we frame our lives for ourselves as well.
[21:16]And like I do look at my life and think
[21:18]that this is a pretty great life that we have now.
[21:22]And but all of the things,
[21:26]but even amidst that, being Adelaide's mom,
[21:30]even though I only got to be physically be her mother
[21:35]for four years, I still feel like the luckiest woman
[21:38]in the luckiest mom in the world
[21:39]that I got to be her mother.
[21:41]And I got to care for her and I got to know her
[21:44]and I got to learn the lessons from her.
[21:46]And so while I don't think many people would look at my life
[21:50]and be like, yes, that woman is definitely the luckiest.
[21:54]I'm certainly not the unluckiest
[21:56]and there are many capacities within my life
[21:58]that I truly do feel like I'm the luckiest
[22:01]if I slice the perspective one way or another.
[22:05]I think.
[22:06]And you. Of course I'm me.
[22:07]Absolutely.
[22:11]The part, my half of that story exists
[22:16]and I think back in the old days,
[22:18]there was a book that was called Rockets and Parachutes.
[22:20]Yes. Right.
[22:21]And it was about, I think that was the middle,
[22:24]the middle version of this story.
[22:26]And I talked about being in the show,
[22:30]feeling like there was like this rocket pulling me
[22:32]in this way to do these unbelievable things.
[22:35]You know, like out of why wildest dreams
[22:39]about musical theater kid, right?
[22:41]And this is what I want to do
[22:43]and us as this young couple being able to go
[22:47]and experience this life.
[22:49]You know, but for this parachute dragging behind
[22:54]of two parents, of a sick child
[22:58]and trying to navigate
[23:02]that can be really difficult to walk into a theater.
[23:08]And you know, I, for my part of this story
[23:11]would get to leave and walk into the theater
[23:14]and put on these clothes and put on a microphone
[23:18]and escape into this other world
[23:21]while she was living this whole other life
[23:26]that I didn't know, like from seven o'clock at night,
[23:29]from six o'clock at night to when I got home
[23:31]that I wasn't part of.
[23:33]And I would always say, you know,
[23:36]when I finished my job,
[23:38]like I would get an applause and people would just clap
[23:40]and hoot and holler.
[23:43]But I was like, the person, the surmante said needs
[23:45]their applause, what I was in the back of the house
[23:47]and some of that that she's finally getting
[23:49]a lot of that recognition.
[23:51]But to speak about that, like,
[23:54]we were in this place where we could talk about this
[24:00]and we could partner with organizations
[24:03]and talk about these things.
[24:05]And this terrible thing would be said sometimes
[24:09]by people that sometimes that we would love,
[24:11]that we love.
[24:13]And it would be said,
[24:14]I say that in like a nice way,
[24:15]but it's really hard to hear sometimes
[24:18]where someone will say, oh, well,
[24:20]this is the reason that happened.
[24:22]Everything happens for everything happens for a reason.
[24:25]And here we are able to.
[24:26]And I'm like, I don't know if that is the line.
[24:32]The line I'm going to toe here.
[24:35]And so that idea of reason I think is
[24:38]became super important to us and to her
[24:41]and a lot of what's going on and the words
[24:43]she's been able to share.
[24:44]So talk about that.
[24:46]Talk about where that has led you.
[24:48]So yeah, we quickly decided that we do not believe
[24:52]that things happen for a reason
[24:53]because I think that's bullshit.
[24:55]And there's no, there's some things in life that happen.
[24:59]And you think.
[25:00]I think there is no reason good enough for some of the things
[25:03]that happen to us in life.
[25:04]Like I don't unsubscribe.
[25:06]Ah.
[25:10]However, we did come to the conclusion that we can make,
[25:14]we can make the reason out of the things that happen in our lives.
[25:18]And so we were, actually, if you purchase a book tonight,
[25:23]there will be two bookmarks in all of your books.
[25:27]One of them is from an organization called Cure Epilepsy.
[25:30]And we actually have some representatives
[25:32]who are here this evening.
[25:33]You have more questions.
[25:35]But Cure Epilepsy was an organization
[25:37]that we became involved with very early on
[25:39]and actually really gave my life purpose in all of this
[25:44]because I had gone from being our family's primary breadwinner.
[25:47]I was coordinating and selling events
[25:50]for Tom Clicchio's restaurant group one day.
[25:52]And then Miguel Books Hamilton,
[25:54]I was supposed to be the director of sales
[25:57]for another restaurant group.
[25:58]Sugar, mama, sugar, mama.
[26:00]Yeah.
[26:02]Official title.
[26:04]And he calls me while I met my going away party
[26:07]for the Tom Clicchio job and says, I got it.
[26:09]The job we're moving to Chicago.
[26:11]And I was like, oh fuck, I have to go tell the other job
[26:14]that I'm not going to be able to take it.
[26:18]So I literally went over and I went to bed
[26:20]and woke up a stay-at-home mom slash caregiver slash
[26:25]all of the things.
[26:26]And it was such an adjustment.
[26:29]It was so jarring and moving to Chicago
[26:33]and not knowing anyone and having a sick kid
[26:35]and all of things.
[26:36]And then I get introduced to Cure Epilepsy
[26:39]and all of a sudden my life had meaning
[26:42]and I had a purpose again.
[26:43]I had goals and I got to be Kelly again
[26:48]because when you're in the hospital with a sick kid,
[26:49]it's mom, how are you?
[26:51]Mom, what's her baseline?
[26:52]Mom, can I get you anything?
[26:54]When I was with Miguel at events,
[26:55]I was Miguel's wife even down to like my dinner table,
[26:58]like please name it would be like,
[27:00]this is Miguel Stravonta, and I'm like, I.
[27:05]But with, when I'm volunteering with an organization,
[27:08]I get to be Kelly.
[27:09]Yes, I'm there because of Adelaide,
[27:11]but I'm Kelly when I'm there.
[27:12]And that was so important to me and my sense of self
[27:15]and my sense of identity to Cure Epilepsy
[27:19]is the largest funder of non-governmental epilepsy research
[27:23]in the country, if not the world.
[27:27]And I am just in this day and age when NIH budgets
[27:34]are being cut left and right.
[27:37]It is more important than ever
[27:39]that we are supporting medical research nonprofits
[27:42]because they are literally keeping lights on in laboratories
[27:47]that would not otherwise be able to,
[27:51]would not be able to stay open.
[27:53]And so Cure Epilepsy is a phenomenal organization
[27:56]that I am so passionate about because Adelaide had epilepsy
[28:00]and it is so significantly underfunded
[28:04]in the US, let alone the world.
[28:07]The other organization that you'll receive a bookmark for
[28:11]is called the Undiagnosed Diseases Network Foundation.
[28:15]I sit on the board of both organizations,
[28:17]so I am just smidge by us.
[28:19]But the UDNF, their mission and goal
[28:22]is to support families who and patients
[28:25]who are undiagnosed.
[28:27]So what a lot of people don't understand
[28:30]is that you don't always go to the doctor,
[28:33]run a couple tests and you get your diagnosis
[28:35]and you know what's wrong.
[28:36]There is a whole slew, in fact, two-thirds of people
[28:38]with epilepsy never find out why they're having seizures.
[28:42]But there's a whole slew of other people
[28:43]who have to go on these long diagnostic journeys.
[28:46]We never knew during Adelaide's life
[28:48]why she suffered the way that she did.
[28:51]We actually donated her brain to the Undiagnosed Diseases Network
[28:54]and four years after she died,
[28:56]we finally got an answer.
[28:58]Her diagnostic journey took eight years, double her life.
[29:02]And that is wildly unacceptable for,
[29:06]and so if you think of like another child or an adult
[29:09]or anyone else, we have got to figure out
[29:10]ways to shorten this diagnostic journey
[29:12]and make these strides.
[29:14]And the UDNF is working with patients,
[29:18]with caregivers to try and help shorten that process,
[29:22]help make those connections to the doctors,
[29:24]to the treatment centers and facilities
[29:26]to help them find a diagnosis for the patients
[29:31]so that they can potentially then also fund treatments.
[29:36]You know, it's not just about getting the diagnosis,
[29:38]it's also about finding treatments and pushing signs forward
[29:41]in that way for rare alter-rare patients.
[29:43]So those two organizations are the ways that we make meaning
[29:51]out of all of this.
[29:52]Like it's never gonna be enough,
[29:54]but if we can move the needle a little bit,
[29:56]if we can make like better for another family.
[30:00]or bring awareness in some way to some piece
[30:03]that will raise money.
[30:05]There are Q-gar codes on the bookmarks,
[30:07]if you are feeling so inclined and generous this evening
[30:09]and would like to make a donation,
[30:10]it would be very much appreciated.
[30:13]But that helps make meaning,
[30:17]it helps build,
[30:18]Hamilton is so much about legacy,
[30:20]it helps us build a legacy for Adelaide
[30:23]and keep home memory alive,
[30:25]which we do in our home.
[30:27]Her pictures are everywhere in our home.
[30:30]Jackson on his cell phone,
[30:32]he has his lock screen,
[30:34]is a picture of Adelaide and Anessa
[30:37]that he's like cropped together,
[30:38]even though they were never both in our family
[30:40]at the exact same time.
[30:43]They're together on his cell phone,
[30:45]lock screen,
[30:46]and then you open it up
[30:47]and it's a picture of him and his girlfriend.
[30:48]But we're there, we're there.
[30:53]We're focused on the lock screen.
[30:56]But then, Anessa, even though she came into our life
[30:59]two years after Adelaide passed away,
[31:00]she has her own relationship with Adelaide,
[31:04]which she'll read about in the book.
[31:05]And it is just so wildly beautiful
[31:08]to be able to see her memory carry on in our family
[31:15]in such a beautiful way.
[31:16]And I also hope that because grief is so universal,
[31:20]because we don't get out of this life without experiencing
[31:24]loss that perhaps the way that we have been able
[31:26]to keep Adelaide's memory alive in our family
[31:29]will help others find ways to keep their loved ones
[31:32]memories alive in their own families.
[31:36]I have a question for you, sir.
[31:37]Okay.
[31:39]I have written about our life, how we met
[31:44]and some transgressions and some sexy times.
[31:50]Yeah, I don't get in there.
[31:52]How does it feel to be written about?
[31:58]It's funny, like the when you read a memory,
[32:02]right, do you think I have a memory a certain way
[32:05]and I read a memory the way she remembers it?
[32:08]So wait a minute, who's right here?
[32:11]Probably not me, but it's interesting to hear a perspective
[32:15]of a memory or a thought that, you know,
[32:20]like I said, I can't say it before,
[32:21]but there are things about sort of your life
[32:28]that I know.
[32:32]But I don't think I, there was a little bit
[32:34]about about the other one, go in a deep hole
[32:42]or second, I knew that it was difficult, right?
[32:47]I knew that there was a time that we were having problems,
[32:52]not us as, but as sort of the caregivers,
[32:57]as the Hamilton guy and the mom navigating this thing
[33:03]and you remember it as a time, like as a moment.
[33:09]And when you read about it, you remember it as being so,
[33:14]so heavy, you know what I mean?
[33:16]And I think that is what caught me mostly off guard
[33:19]is how we carried this heavy load every single day, you know,
[33:27]like every day.
[33:28]And it wasn't, hello, it wasn't,
[33:32]it didn't feel extraordinary, it didn't feel,
[33:37]and I'm like, it's like, did we do that, did you do that every day?
[33:43]Every day.
[33:43]And that to me is one of the most moving parts of it
[33:48]to say that that was what normal became
[33:53]and how heroic a life that was.
[33:58]The part of how we met, I'm not gonna go into it too much
[34:03]but there was possibly some shenanigans
[34:09]on all my parts.
[34:11]So I just wanted to know,
[34:15]then once you know it's fully accurate,
[34:17]that part is true and guilty.
[34:22]So when you see, you had a girlfriend when we met.
[34:26]Okay, all right.
[34:28]When it's early in the book, it's early, I'm okay.
[34:31]Well, clearly we made it, but it was so funny
[34:34]when I was writing, it's like, are you gonna put that in there?
[34:36]I know, it's like, yeah, but what if she finds out?
[34:39]What if she reads it?
[34:41]I was like, 20 years ago.
[34:43]20 years, I think, and she's like, she's over.
[34:46]I mean, it's okay.
[34:48]But mostly I think that it confirms like, you know,
[34:53]the role of my life that I sort of hold on to a lot is this.
[35:00]Hamilton role and I can, it's been sort of ingrained into who we are and how we interact
[35:07]with the world, but I am really sort of excited about the role of proud husband as I
[35:15]get to sort of take a step back and watch her do your things. So that's what really makes
[35:21]me the most excited.
[35:22]I'm not going to lie, I really, really enjoy. He gets introduced as Kelly Cervantes
[35:28]It's pretty good.
[35:30]Oh, God, I feel so good.
[35:33]So what do you guys want to know? What's happening? What's the burning questions you have about?
[35:41]I felt like throughout the book there were these things of you guys having to be in like
[35:47]fight or fight. There were so many times in Adelaide's life where it was like sudden
[35:52]an urgent you're like looking for a taste in Chicago and you're calling her being like
[35:57]we're going to the hospital. Now that that part of your life is not here, do you find
[36:04]that same fight or flight or that like you're carrying on?
[36:10]I did for a long time after Adelaide passed away. I would have panic attacks in the
[36:17]line at the grocery store and I couldn't figure out what was triggering them and I
[36:23]eventually realized that it was because and I would happen to like if I was getting my
[36:26]nails done. It was any time that I was somewhere where I felt like like I'm in line and
[36:32]there's someone behind me and there's someone or like my nails are getting done like
[36:35]their wet and I can't it was any time I was doing something where I couldn't immediately
[36:39]just like pick up and run and because I was I lived my life with my phone ready to drop
[36:47]and go at any moment or whatever she needed and so that carried on for several years
[36:54]after she passed away. That's like like any time I was locked in somewhere. I was like
[36:59]oh god oh god okay like what do I do? What is my exit strategy if I have to get out?
[37:05]Now I feel like my kid's bear an unfortunate brunt of what is my really fucked up
[37:13]her life perspectives because I'm like are you seizing? Are you breathing? Do you have
[37:18]a fever over a hundred and five? You're fine. You're going to be fine. We're going to get
[37:23]through this. I had like everything out like it all sort of pills and which is not fair
[37:28]to my not really fair to our children. My daughter had the flu and she had a temperature
[37:33]of a hundred and two and I'm like man you're fine. And when you were there she's going to
[37:39]take it or the ER. Give her some ad bills. Give her an ad. Give her an ad. Give her an ad.
[37:43]Give her an ad. Give her an ad. Give her an ad. Give her an ad. Give her an ad.
[37:45]I can't put tomorrow too. I think that's true. Like that that what I was just saying before
[37:50]you know you you think about what your what your normal was and what is what feels important
[37:58]what feels serious what feels so heavy now is not doesn't have as much weight though
[38:07]to make sure that you know giving giving sort of when when something is sad. What's
[38:15]I tell my I tell my daughter all the time I said look there are things to cry about
[38:19]and there's not things to cry about but crying is okay. You know what I mean crying is okay
[38:26]not about the iPad to make sure that it's given space given space to make sure that even
[38:32]though that they like we were just hanging out with some friends of ours today who have
[38:35]a daughter and who's in it they're in it and just significantly disabled she is and
[38:42]she's nine years old and they they've just put her into hospice. She has a neurological
[38:47]condition. They're like similar to that. So that's a great that's a great thing of like
[38:53]that's what it was and that's what that fighter flight and and he was in conversation with
[38:58]us about this and that the other thing and doing these unbelievable things like oh like as if it
[39:03]was but everything that we did that was not there that we hadn't done exactly like we had done
[39:07]that was like wow wow it feels like this you know looking at it watching it but knowing it's not
[39:16]knowing that that becomes just every day every day and there was a weird part of me that was
[39:23]I remember that and I kind of missed that yeah and I don't want my daughter to be suffering
[39:31]but I do miss her you know and so that's it's a weird yeah yeah yeah yeah yeah yeah I was
[39:40]when you were in that position you're as a caregiver as a mother as a white husband etc
[39:48]um what we're telling what were your kind of escapes or how did you find them and incorporate them
[39:55]into such a difficult time um
[40:00]epilepsy was my escape going to be like as ridiculous as that sounds because it was still the
[40:04]condition that like but that was my escape without like because it gave me because otherwise
[40:14]it was just like sitting on the couch and texting with back in New York City and just connecting
[40:22]with writing. It was starting the blog and connecting with people online and social media and
[40:29]but every escape that I had was contingent on Adelaide's health and Miguel's schedule
[40:36]because if he had something an event pop up or she had to go to the hospital then I had to
[40:40]drop everything so it was very different where it is now where I'm like now I'm like oh I'm
[40:46]going to go read a book and isn't that lovely I'm going to go do a puzzle that sounds like but like
[40:52]I get to have I get to have the hobbies now and I didn't have them during Adelaide's life
[40:59]I just didn't think I couldn't you know it was more about just with other people and feeling not alone.
[41:10]So you talked about the title and you also talked a lot about grief and dualities and so I'm just
[41:16]curious and I hope this is a tough question but I'm wondering if you ever acknowledged the kind of
[41:24]from her perspective that she was the luckiest to have a mom like you who is so devoted because
[41:30]not everybody would have that and if you've looked at her lens. Thank you. I have not
[41:39]um but now I'm going to cry. No you're good. No it's so sweet. I
[41:48]I believe that 90 to 95% of the people who would be in my position would do
[42:01]very similar to what we did how I cared for her like I don't feel like I honestly truly
[42:07]do not believe that the way that I cared for Adelaide was that much above and beyond what
[42:12]any other parent who has a disabled child how they would care for their child. We had a platform
[42:20]and a microphone to talk about it and people cared what we were doing and what we had to say because
[42:25]he had long hair and more tights on stage and so but it's the truth of it right like people cared
[42:34]and so we got to go on the news and the today show and talk to Al Roker and be like hey look
[42:39]look at this look at this like look at this look at seizures can do look at all of the you know
[42:45]and yeah this is the school that he gets to go and sing on stage every night but I truly
[42:51]believe like as I know I hate these other families and I see with these and I like we got to cut
[42:56]corners to get into doctors aren't like there are some pieces of this that was easier for us.
[43:03]I think about the families out there that that don't have the means and are struggling with
[43:09]subpar health insurance. I think about the families that don't speak English as a first language
[43:13]or who aren't taken as seriously because of the color of their skin and all of these things like
[43:18]we had all of these advantages I was already functioning at just a on something that is extraordinarily
[43:25]difficult but I was given all of these extra advantages and so I yes I perhaps Adelaide was lucky
[43:38]to have us I but I genuinely believe that families across the country are parenting and caregiving
[43:49]in very very similar fashions and they just don't have the platform or the time or the
[43:54]the choice to to share about what their daily life looks like. I can just add on that. Even though
[44:01]you had the platform have the platform and had some you know perhaps ends to different treatment
[44:08]your effort your pursuit your complete commitment to seeing it through because of the love you have
[44:15]your daughter is different and I can see it across so many families and so many families caregivers
[44:22]try their absolute hardest of course but please don't lose sight of just how unique you
[44:31]both were to caring and giving out most love. I mean look I will say this I we were we were
[44:39]admit we had advantages but there are people who have lots and lots of money and lots of access
[44:46]that don't make it I think so it's a testament to us and her and you know as the primary caregiver
[44:56]um that she knew you say a little every I
[45:00]Like, the parents are gonna figure it out.
[45:01]I'm like, I'm so glad it wasn't me that had to figure it out
[45:04]because what she did was I was terrified
[45:07]if she had to go away for a night or at afternoon.
[45:10]And she's like, did you give the meds?
[45:11]I was like, I don't know.
[45:12]I think so.
[45:13]I look, I read the list.
[45:14]I did the thing.
[45:15]And so, oh hello, hello, get out in here.
[45:22]But to say that the work that we did
[45:27]to make sure that we were okay.
[45:31]I think it was important on her.
[45:36]And then to say, Adelaide was lucky to have us.
[45:43]But the fact that she needed us to keep it.
[45:48]I don't want it.
[45:49]I mean, I don't want her to need us like that.
[45:52]And so, she was unlucky.
[45:55]And so, there's no real way to define, I think,
[45:57]what it actually means.
[45:59]But that we get to sit here and talk to you.
[46:02]And she gets to make this amazing thing
[46:05]is a way to leave something behind that,
[46:14]and call it whatever you want.
[46:16]You know, call it whatever you want.
[46:21]Is that it?
[46:21]Is that it?
[46:22]Yeah?
[46:24]Yeah, I just have to tell you
[46:27]that I am slowly present by you as an opera.
[46:33]I think you're a girl way out there.
[46:35]And she's a shiny object.
[46:39]She's a shiny object.
[46:41]But what most impressive meaning as a person
[46:46]and a grief surface as a brief sibling of many, many years,
[46:52]is what you have done as a couple.
[46:56]And I know how difficult it is for caregiving,
[47:02]lots of times resentment can be something you know about.
[47:07]It's just, it might be a couple chapters about that.
[47:12]And also the fact that humor has survived
[47:16]in this relationship.
[47:18]And I'm just, I just have to tell you
[47:23]how impressed I am about that.
[47:25]And the second thing I have to tell you
[47:27]that I'm impressed about because I just love it
[47:29]is when we're able to make meaning
[47:32]with relationships and continuing bonds
[47:35]in the field that what we call it.
[47:39]And that both Jackson and the next to have
[47:42]a relationship with Natalie,
[47:43]because I think those are the pieces that are missing.
[47:48]In many families, because we don't talk about it enough.
[47:51]And people are afraid or they're afraid
[47:53]that we're going to make something unhappy
[47:54]or we're going to make them sad.
[47:56]And I think it's exquisite that the kids have
[47:59]about it with their sister.
[48:01]So congratulations to both of you.
[48:04]I know this is not easy.
[48:06]But this gap in Boston is really impressed by it.
[48:11]Thank you so much, I appreciate that.
[48:15]Well, with that, the word, the word,
[48:25]autogita means caterpillar.
[48:29]And a caterpillar turns into a butterfly.
[48:35]The word, mighty fosa, is butterfly.
[48:39]And the change that has to be happened
[48:44]is, in fact, with the end, their end results beautiful.
[48:48]But to get there, it seems pretty difficult.
[48:52]Seems pretty involved and heavy.
[48:58]But sometimes, in order to get to the beautiful,
[49:03]you have to go through the heart.
[49:04]And so this is called Dos autogitas.
[49:09]Dos autogitas, enamburadas, pasansus noches,
[49:24]emadrugaras, jenas de yambre, segan and tando.
[49:31]Enare gando un mundo, que cambia is que cambiando.
[49:36]Enare gando un mundo, que cambia is que cambiando.
[49:42]I autogitas, noches, agua, te enmas.
[49:47]I que cres cera, pare, te bovell.
[49:50]I see the mon pes, sagueras, jenas, mi la gros.
[49:54]I que bovell, que cambiando, que construeras,
[49:59]to propio.
[50:00]Oh, oh!
[50:03]Oh, oh!
[50:10]Those four G-tas,
[50:14]Desporyand Tara's
[50:16]Indos kapugos
[50:20]Biena'amri-gara's
[50:23]Consunios nuevo's
[50:55]I can dance to prop your footuro.
[50:59]I'm ready for sass.
[51:01]No say I want en masse.
[51:03]I can't share a part of a man.
[51:06]I see the man desegiras.
[51:08]Just show me lardos.
[51:10]Romping off his alley, lard.
[51:12]I can't control.
[51:17]Suprop your footuro.
[51:21]Thank you so much for being here, everyone.
[51:28]Thank you, everyone, who fought traffic.
[51:30]I know traffic was terrible.
[51:31]If you're on sunset, I guess.
[51:33]There's terrible.
[51:34]Please buy this book.
[51:36]Her other book is called Normal Broken.
[51:38]This is her second book in case you didn't know that.
[51:40]Her other book is available all over the place.
[51:42]And her word books are sold.
[51:43]But this one's available right here.
[51:45]Thank you, ZB's for having us.
[51:46]Thank you so so much.
[51:47]Thank you.
[51:48]And yeah, I'm saying hello to this amazing woman.
[51:53]Yeah.
[51:58]Adelaide's called Adelaide.
[51:59]I know.
[52:00]It's a book about it.
[52:01]No, I noticed it.
[52:02]And then last yesterday, we weren't saying Diego.
[52:05]And the restaurant across the street from the bookstore
[52:10]was called Adelaide.
[52:12]I was like, OK, baby girl, I see you.
[52:16]Let me know where I'm supposed to be.
[52:19]Isn't that so cool?
[52:23]Oh, my God, I know.
[52:25]I know.
[52:26]I saw that.
[52:27]And now I need to read that book.
[52:29]Yeah.
[52:31]Thank you so much.
[52:32]I hope to be here.
[52:33]I feel like we were very lucky to be here tonight.
[52:37]Can you hear me?
[52:38]The coffee is in the book.
[52:39]So can you hear me?
[52:40]I'm not sure.
[52:41]I'm sure they'll be happy.
[52:43]Fine.
[52:44]Yes.
[52:45]All the things.
[52:47]Thank you so much.