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51. A Quest For A Cure- with Miguel Sancho
73 Plays4 years ago
Miguel Sancho (a former ABC producer)is the author of MORE THAN YOU CAN HANDLE: A Rare Disease, A family in Crisis, and the Cutting-Edge Medicine That Cured the Incurable. Listen to this candid and brutally honest conversation about how he and his wife Felicia Morton discovered that their son, Sebastian, had chronic granulomatous disease, CGD a deadly immune deficiency, and their quest to find a cure. We talk about his own personal crisis, primarily dealing with stress, and his search to find ways to navigate it, including meditation, therapy, and medication. In our conversation we also talk about the support system they had along their journey, as well as the growth and learnings that have come from this process.
Miguel Sancho’s Book will be available on March 2nd in all your favorite local or online bookstores. https://www.penguinrandomhouse.com/books/611475/more-than-you-can-handle-by-miguel-sancho/
Contact Kendra Rinaldi if you want to be a guest on the podcast or for a one on one coaching call https://www.griefgratitudeandthegrayinbetween.com/
Music: https://rinaldisound.com/
Logo design: https://pamelawinningham.com/
Production: Carlos Andres Londono
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Transcript
00:00:01
Speaker
And even though in the course of being a journalist for 20 years, of course I interacted rather intensely and rather personally, intimately with people who had had terrible things happen to them, be it crime or fraud or war. I had not acquired my own kind of mental immune system to deal with the onslaught of a major trauma. And I am not proud of this, but I did not handle it particularly well. I spent a lot of time being
00:00:32
Speaker
racked with anxiety. I spent a lot of time being depressed. I spent a lot of time being angry, operating under the kind of false assumption that anger and other kind of ego affirming things are legitimate antidotes to things like fear and anxiety. Hello
Introduction to Podcast and Guest
00:00:54
Speaker
and welcome to Grief, Gratitude, and the Gray in Between podcast.
00:01:01
Speaker
This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
00:01:17
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys. I'm Kendra Rinaldi, your host. Now let's dive right in to today's episode.
00:01:40
Speaker
Welcome. Today, I have
Miguel Sancho's Background and Book
00:01:43
Speaker
the honor of chatting here with Miguel Sancho, author and, my gosh, a whole bunch of other titles, producer. What other things, Miguel? Aside from author, father, we had probably other titles before you became an author. So what were all these other titles you had? Well, mostly I just have a profession. I'm a journalist and I work in
00:02:10
Speaker
A couple different media, primarily television. This is my first book. I've done some print before. I've done some radio before. But yeah, my gig is being a television producer. And I have told lots of other folks' stories with a certain degree of competence. And what this book was, was an attempt to train some of those journalistic
00:02:37
Speaker
energies and skills on the experience of my family. And that's kind of how we came up with this book.
00:02:44
Speaker
That's wonderful. And the title of the book is More Than You Can Handle, A Rare Disease, A Family in Crisis, and the Cutting Edge Medicine That Cured the Incurable. And this is my first time reading about this. And I took some notes, but I will have to shift here with my word, pull them out and stuff. But we'll just have this conversation here. But I had never heard of this disease. So let's start off there.
00:03:11
Speaker
What
Family's Ordeal with Son's Illness
00:03:12
Speaker
is what was the situation that happened in your family that then led you to? write this book about the story that Sebastian and you and Lydia and Felicia your wife and Lydia your other daughter and Had Yeah, so there's the part of the story that's very specific and very narrow Which is always the case with rare diseases and there's the part that's much more general and broad that a lot more people can relate to so
00:03:41
Speaker
The story goes like this. We were kind of a typical happy family, perceived ourselves to be kind of on an upward trajectory after having married and having our first wonderful daughter named Lydia, as you described. And we loved parenting so much, we wanted seconds. So we got pregnant again. And in May of 2012, we were blessed with the birth of a baby boy named Sebastian.
00:04:10
Speaker
But about seven or eight weeks old, he started getting a series of very serious infections.
00:04:15
Speaker
infections that nobody could really identify. That's not exactly true. They could identify, but they couldn't explain. Sorry. And as a result, we spent months going in and out of hospitals. Some of these infections required surgeries. And it wasn't until my wife, Felicia, kind of put her foot down and said, this isn't just a string of bad luck. I think something systemic is going on here that we went to an immunologist who, after performing some rather
00:04:45
Speaker
good detective work and some rather thorough diagnostics came back with the news, which was good in that it gave us clarity and terrible in that it gave us a devastating change of direction and upending of our entire lives.
00:05:05
Speaker
And that news was that our son had been born with a genetic mutation on his X chromosome that made it impossible for his immune system to fight off several bacterial and fungal pathogens for a variety of reasons.
00:05:22
Speaker
The disease is called C-G-D. I know, I couldn't pronounce that. Yeah, that second part. That's why I was like, I wanted you to say it because I could not pronounce the, and I'm actually, I have something in common with you. I'm actually have more in common with Mercedes, your nanny, than with you. I'm from Colombia as well, like your nanny, Mercedes from the book.
00:05:45
Speaker
Yeah. And so you do speak Spanish as well. I know your parents are both Hispanic. I didn't know you spoke Spanish as well. So, yeah. So can you pronounce the... Not easily. And frankly, that is the problem with all these rare diseases. Nobody's ever heard of them. Many of them are impossible to pronounce or remember. And a lot of them don't even have names that relate logically to what is going on. So the disease is called chronic granulomatous disease. And it basically means
00:06:12
Speaker
Your,
Life Restrictions and Psychological Impact
00:06:13
Speaker
some of your white blood cells called neutrophils go to the side of the infection and they try to fight it, but they can't. And so they just pile up there and they create these clumps called granulomas. And that's what the disease ultimately, um, how it got its name. But the bottom line is, uh, if you have CGD, it means you have to live your life in some form of. Quarantine to use a term that we're all, you know, familiar with these days, um, not full on.
00:06:41
Speaker
what we call kind of boy in the bubble situations in certain stances. But you have to be very cautious of a whole variety of things that us people who don't have the disease can kind of don't consider threats at all. And they range from things like cut grass to wood chips and playgrounds to sand and sand pits. Every childhood, what a child would actually be around.
00:07:08
Speaker
Yeah. Right. And so this is the part that I think a lot of your audience can relate to who've never heard of this disease, which is the news hits you. Right. And you think your life is going in one direction and you've made plans for the future and you have this whole vision of how things are going to be. Of course, understanding that life is chaotic and everything can't be predicted or controlled, but you have to have some sense of order just to get through the day. Right.
00:07:38
Speaker
And then something comes and just throws you overboard. That's the metaphor I use in the book, right? I invoke the story of a passenger on a cruise ship who, in reality, fell off the cruise ship and found himself on the Gulf of Mexico wondering how he got there and watching the cruise ship steam off on the horizon. And that's really the closest I can come to the kind of mental disruption that that news has on you.
00:08:08
Speaker
and then there's the emotional part and the psychological part.
00:08:12
Speaker
and
Emotional Journey in Writing
00:08:13
Speaker
you touch on all of those and you touch on all of those in the book and very candidly I want to say as the parts I've already read and I am very grateful for that because to be vulnerable like that it is it's not easy but at the same time I think that by doing so so many other people that go through situations similar to what you're going through when they read that book they say like oh my goodness I was not alone feeling this way when my child got
00:08:42
Speaker
diagnosed or I was not alone, I'm not the only one that's having dynamics with different difficulties in my family dynamics because of how everybody copes with the stress and so forth. And that's one of the big things you touch upon in the book is the stress component, correct? Yeah, well, I think one of the things that I found when I started
00:09:09
Speaker
kind of had an obligation to read lots of stories like this is that oftentimes, and I don't mean to criticize other people's stories, but they would often be told in the sequence of events that yes, things are fine, and then you get this terrible news, and of course it's devastating and crushing, and then people find these
00:09:32
Speaker
Apparently, bottomless reserves of strength and altruism and concern, and sometimes they find reserves of money to help fund research and things like that. And that's wonderful. And that's great. And those stories need to be told and shared. They're very inspiring. But for a lot of us, we're not Bill Gates, and we're not Mother Teresa. We're people, at least I don't say we, I. Let me talk about my own weaknesses here.
00:10:03
Speaker
I wasn't prepared for this. I hadn't had a super privileged lifestyle, but I had a lot of things break my way. I hadn't dealt with a capital T trauma in my past before. And even though in the course of being a journalist for 20 years, of course I interacted rather intensely and rather personally, intimately with people who had had terrible things happen to them, be it crime or fraud or war.
00:10:30
Speaker
I had not acquired my own kind of mental immune system to deal with the onslaught of a major trauma. And I am not proud of this, but I did not handle it particularly well. I spent a lot of time being racked with anxiety. I spent a lot of time being depressed. I spent a lot of time being angry.
00:10:57
Speaker
operating under the kind of false assumption that anger and other kind of ego-affirming things are legitimate antidotes to things like fear and anxiety. And that
Coping Mechanisms: Therapy and Meditation
00:11:09
Speaker
sent me on this whole other journey because I had to stop making things worse. The situation was terrible. My family was in a state of crisis.
00:11:24
Speaker
Again, this is, it's not easy for me to talk about. It wasn't easy for me to write. The truth is there were times when I made things worse and instead of helping. So the question is, how can you stop that? How can you stop creating hell on earth? How can you keep it together when you're in this situation without any bearings, without any guidance and you have to do something that
00:11:52
Speaker
no baby book will tell you how to do, which is how to watch your child suffer. There's no manual for how to watch your own child suffer. And I'm talking about not just a child that breaks a leg in a car crash or something, which is obviously terrible, but getting the news that for the foreseeable future and possibly forever, your child will have a severely restricted
00:12:19
Speaker
quality of life and possibly quantity of life when you heard that aspect like as you even just saying the aspect of quantity not just the quality
00:12:36
Speaker
how did you guys, or still, wrap your head around that? And the story takes you through all the process, but how do you guys wrap your heads around that? And we know that life, none of us live forever, but that fact of hearing diagnosis is like that. How do you deal with that as parents? And you yourself, since I'm talking to you.
00:13:03
Speaker
So for part of this book, I didn't just kind of tell my story because I'm not that interesting. But I talked to a lot of other families who had to deal with this because it is a singular thing. And I was just interested what kind of reactions and behaviors people have commonly. And of course, one of the first things is denial.
00:13:34
Speaker
With the case of a genetic immune deficiency, you know, at first we kind of just resisted the diagnosis. We thought, you know, the test must have screwed up somehow. And you must have got a false positive. And the doctor was able to walk us through that and say, no. So we came around on that finally.
00:13:57
Speaker
Then you think to yourself, well, maybe this is something that can be treated with diet or some other kind of less intrusive or less life changing form of treatment with immune deficiencies.
00:14:14
Speaker
Because the form of treatment for this, as you were finding it, was bone marrow, that was the bone marrow transplant was what the, right? The solution. Yeah. Okay. Just so that, because we haven't mentioned that. So that if the listeners. Certainly. Certainly. So for your listeners with this particular disease, you can live with it. You, there are people who do live with it.
00:14:35
Speaker
But that involves some of the environmental restrictions and lifestyle restrictions that can be very constricting depending on what variety of the disease you have. And it requires serious and ongoing constant prophylactic medications, antibacterial, antifungal. There are certain special medications that work to a certain degree to help mitigate the
00:14:57
Speaker
severity and frequency of infections but you're still you can bank on having a life-threatening infection once every three years or so and you know when the disease was originally diagnosed it was called lethal disease lethal chronic disease because people didn't live now they can thank some of the amazing advances in medicine pharmaceutical but so that's one option
00:15:24
Speaker
There's only one true cure to treatment, which is itself one of the most harrowing, lengthy and risky medical procedures you can undertake. And that is a bone marrow transplant or more technically called a hematopoietic stem cell transplant. And so both of these choices were obviously just devastating. You don't want to have to make that kind of choice.
00:15:49
Speaker
want to let the child, in fact, grow until they're of the age of consent, and they can make the choice for themselves. The catch there is that the longer, with this particular condition, the longer you wait, the less likely it is that a transplant will be successful. The rates of success, at least at the time that we did it, the rates of success are significantly higher for kids of a younger age. So like I said, we were kind of in denial.
00:16:20
Speaker
We didn't want to have to make these choices. We weren't equipped to make these choices. And then, of course, we made the terrible mistake of Googling the disease on the internet. And all, please. Dr. Google. Dr. Google. Yeah. I do not like putting myself in the position of giving unsolicited advice. But my goodness, if you're in a state of anxiety about a medical condition, Googling it can
00:16:48
Speaker
very easily make it 10 times worse. And that's what I did. Yeah, yeah. And then, you know, it was just a long period of sleepless nights and crying. And, you know, you're looking for some way to get back to normal. You're looking for something to hang your head on and turn around. You're looking for a break. And we didn't get one for a long time.
00:17:16
Speaker
I
Mindfulness Meditation and Identity
00:17:17
Speaker
was trying to function, I was trying to compartmentalize, and some days I was okay at that, and some days I wasn't. And that ultimately sent me on this whole other kind of journey to find some way to make sure that I could function.
00:17:39
Speaker
Let's talk about that because I think that's one of the things I like to give the listeners is some of the ideas and like the tools that can be out there in any type of grief, you know, journey and the tools that people use in that.
00:17:55
Speaker
so for you it was a quest you had a friend your friend that suggested you go try what was it meditation was it that was it was it Tim that I remember the name it was it Tim Dan Harris I knew it was like a short yeah Dan your friend Dan
00:18:15
Speaker
that recommended you go check out some things. So talk a little bit about the different tools you use then when you were trying to manage your stress. You started kind of in the holistic way and kind of went into different areas. So what worked for you to handle the amount of stress and all these emotions during this time? Right. So I want to answer your question robustly, but I also want to put a disclaimer, which is that
00:18:46
Speaker
I am not a thought leader in this field. I am a thought follower. There are things that I found that worked for me, which I'm comfortable to talk about and recommend to you. But absolutely. This is all about you. Knowing what to do and then. Yeah.
00:19:05
Speaker
Right. Everybody has their own choice, but it's good to hear what other people's journeys have been because one of the things that I realized too in your journey, the aspect of faith was one that was not necessarily one of your core things you held onto at the beginning. That was more Felicia's, right? A little bit more of her, right? Which became an issue for us.
00:19:30
Speaker
Right so that right there that contrast of the two of you kind of having different ways in which you were holding on to something She had faith to hold on to you didn't necessarily so therefore your search was different than what Felicia's was as was Mercedes the nanny who was a big part of everybody kind of has their own way, so Yes, please share candidly. What was your journey? Right so
00:20:03
Speaker
I needed help. OK. It's a tough time to remember. I was having a very difficult time sleeping. I was having a very difficult time just holding it together, trying to be strong for my family, all that stuff. And it was affecting everything. It was affecting my work. It was affecting my marriage. It was affecting my ability to be a good parent.
00:20:29
Speaker
So one of my good friends, yes, is a thought leader in the meditation space. And he introduced me to meditation, mindfulness meditation. As you might know, there's various kinds. There's TM, there's Zen, there's mindfulness practice, all that stuff. And I started doing it. And I can assure you there's people who do it much more seriously and much more regularly than I did. But I did find it helpful.
00:20:59
Speaker
and helpful in a number of levels. Helpful just to realize that you're not your thoughts. You are, and you're not your feelings. You are the being that experiences those thoughts and feelings. You don't have to, you need to accommodate them. You need to make space for them, but you don't have to identify with them. You don't have to let them define you. It's very easy also to
00:21:29
Speaker
if you're not being mindful, to let your mind go in certain directions and down certain rabbit holes. And just taking the step and having the ability to say, hey, I'm having this feeling and it's leading my mind to go down this rabbit hole is one simple but very crucial step towards not letting it, let you spiral out of control.
00:21:52
Speaker
The other big takeaway that I got was this practice called META, which is also known as loving kindness. And just trying to focus on wishing peace and wellness and love upon every living thing that you see. Not just yourself, but including yourself. Not just the people that you know and love automatically, but
00:22:20
Speaker
every other living thing. And it sounds so hippy-dippy, new-agey. And there's nothing wrong with being hippy-dippy and new-agey. It's not necessarily where I come from kind of personality-wise or background-wise. But it worked for me just as a matter of, again, keeping myself in control and learning to respect other people's
00:22:47
Speaker
feelings and sensitivities and boundaries because I needed that. I still need it. By the way, I
Meditation's Limitations and Support Needs
00:22:52
Speaker
can't say this enough. I'm still a work in progress. I am not the guru. I am the guy just trying to figure stuff out. As we all are. Yeah, everybody is. I'm sure the gurus still probably are still trying to learn themselves.
00:23:09
Speaker
What I did, and I think what I want to really convey to your listeners is, I found that the meditation helped me, and if I'd, look, if I had done it more, if I had done it more seriously, if I'd really, really committed to it, I didn't have the time to do it, you know, hours and hours a day. But I did, it did it quite a bit every day for quite some time. It still wasn't cutting the mustard. I still, you know, if I would get a certain setback, in fact, you know, what happened was, I had, so I had this sick, we had this sick child, Sebastian, but we also had the healthy child, our daughter Lydia.
00:23:39
Speaker
So about a year after the diagnosis with Sebastian, Lydia had a health issue. Now it was a relative minor health issue, not life threatening. The spot that appeared? Yeah. It turned out to be a dermatological condition that is easy to live with, not life threatening. But it sent me, again, just into a whole other level of anxiety and depression and
00:24:08
Speaker
I was like, okay, now is the time for the meditation to come in handy. Now is the time that this is all gonna come to the rescue. It's kind of like when the boat has already tipped over, where was my oar? That's when I needed my oar, but it already tipped over.
00:24:28
Speaker
And what meditation is supposed to do is kind of empty your mind of all these negative thoughts, at least enough for you to kind of elevate yourself above that suffering and see a kind of high reality. And I'm here to tell you, if you want to call me kind of somebody who failed in meditation, that's fine.
00:24:46
Speaker
this particular situation I found that the meditation kind of cleared out the cargo hold of my mind and let just all the more room for the one dominating catastrophic thought to just fill up the entire space so so yeah so I'm not saying meditation doesn't work it definitely helps but as Dan himself says it works much more as prophylaxis than as a band so I ended up doing other things I
00:25:17
Speaker
went to a therapist, okay? And we can talk about that. It obviously helps a lot of people. I had, I think I did some benefit, you know, it kind of depends on your therapist. It kind of depends on how seriously you take it. I probably didn't take it seriously enough. And ultimately, I also went on some medications. And what I want to say is that, you know, that took a lot of, it took a lot, it was a big step for me.
00:25:47
Speaker
And, you know, for me, you know, what am I trying to say? It was tough because on the one hand, it was just an admission that what I was trying already wasn't cutting it. And it's like, you know, the ego, the ego, the ego got bruised a little there. The ego got bruised a lot because I am not the world's, you know, I'm not a supermodel. I'm not an athlete.
00:26:17
Speaker
I don't have a ton of money or fancy clothes. What's going for me, what gets me by is my brain and the words that come out of my mouth. And if you're telling me that that's what's broken, that your number one, your superpower is actually a super weakness, that was tough.
00:26:45
Speaker
Then also, I think like a lot of men, there's a machismo aversion to therapy in general, psychotropic medication in particular that I kind of had to overcome.
00:27:00
Speaker
And there's a weird thing about it, too, because, you know, as I mentioned in the book, you know, I had done recreational drugs as a kid. You know, I smoked marijuana, dabbled in other stuff, too. So you would think someone like that, you know, and I was raised by chemists, by the way, who, you know, believe in better living through chemistry. You'd think someone like that with that background would say, yeah, but, you know,
00:27:26
Speaker
I'm taking, I'm putting chemicals in my brain to have a certain kind of experience, you know, to whatever improve on reality. Why wouldn't I do the same to kind of prevent me from having negative experiences? But nevertheless, that was a big hump for me to get over, but they help, you know, um, they made a difference. And, you know, again, I'm not in a position to tell anybody what to do. I'm in a position to listen more than to talk, but I would say, please don't let
00:27:55
Speaker
any kind of shame or embarrassment about that hinder you from doing what you need to do. I wish I had done it earlier. For the sake of my family, for the sake of everybody who knew me, I wish I had done that earlier. Thank you. Thank you for having me. I'm comfortable talking about it, but you gotta own it. You gotta own that kind of stuff.
00:28:22
Speaker
Anyway,
Strategies for Stability in Family Challenges
00:28:23
Speaker
so what ended up happening is I tried all these things. Yeah. And so I've ended up kind of hopscotching around all these different things, whether or not it was, you know, some diet, some, of course, exercise is a big thing, doing the meditation, doing the medication, doing therapy. And, you know, so in the course of these years, I wouldn't necessarily be doing all of those things all the time. I kind of hopscotch around.
00:28:44
Speaker
And I found that worked for me. I have to be doing some of those things all the time to keep my act together. And I will also admit that during the pandemic, I haven't been as good about that as I should. Recently, I've been trying to be better. But it's very simple for me. If I'm doing enough of those things, I can be on my A-game. And if I'm not, it's no guarantee whatsoever that I'm not going to slip.
00:29:09
Speaker
Yeah, thank you. Now what you were saying when you said about the fact that what you thought was your gift like I got really moved in that moment when you mentioned that like the aspect of your brain and having to admit that you did need help in the
00:29:26
Speaker
wiring there in order to be able to help you with the stressors, that take a lot of guts. And so I think there's a lot of kudos you have to give yourself because as hard as all that process was of having to admit you did step outside of your comfort zone quite a bit, even if maybe the timing was not the exact timing that you would have wished it, you still did it.
00:29:53
Speaker
And here you guys are still as a family unit and so forth, even amongst all these different struggles that you went through. Now, let's talk about a little bit more of that, because as I was reading, I wanted to ask you guys, how old was Lydia? Was Lydia just like three or so when Sebastian was born? Is that her age? Yeah, she was approximately four years older than Sebastian. So right now she's 12 and she's eight.
00:30:20
Speaker
And he said, OK, how was the dynamic of the focus, this is as a parent of also to myself, how did it work with the dynamic of having so much focus in that period of years being towards one child when you still have a younger one? How did you guys navigate that journey as parents?
00:30:44
Speaker
of making sure that she understood at such a young age the reasons of why her brother, and there's such beautiful little things there. I'll let the listeners, listeners, yeah, be able to read that, but little things that she did, like with her favorite toy, like her Thomas trains and those kinds of things that I, that she passed down to her brother, like just beautiful, beautiful heartfelt moments for myself, at least when I was reading it. I just want to say that those just brought me lots of
00:31:12
Speaker
Joy to see that but yeah, how did you guys handle as a as parents that dynamic? Yeah, so you know Lydia was just this fire hose of love and light and kind of this Wonderful presence that kind of kept us up and kept us together But you know, that's also a real responsibility
00:31:42
Speaker
And it's a burden that, you know, we did, of course, we never said, you have to be happy and, you know, loving so that we can keep it together. But, you know, I mean, we all, I think, we kind of were depending on her for that. And Felicia, who deserves just all the credit in the world, was wonderful at explaining things to her.
00:32:12
Speaker
was wonderful at including her, was wonderful at making sure that she still got adequate attention and adequate love. I'm sure there's a mountain of research on the challenges that the healthy kid goes through when there's a sick child who inevitably gets a certain degree of attention and focus, even though
00:32:43
Speaker
It's not the kind of attention that you would necessarily want, getting stuck with needles and being in hospitals and all that stuff. So yeah, but she was great through it. And there was a time when we had to decide if we were going to actually go into transplant. It took us years to decide we were going to go through this process of transplantation. And that involved, it had to, it ultimately involved moving to Duke in North Carolina.
00:33:12
Speaker
because that's where the best and this really wonderful pediatric transplant unit is. And so the question was, do we really want to bring her down there? Are we going to be traumatizing her by subjecting her to all this ordeal? And
Sibling Impact on Recovery
00:33:34
Speaker
it's interesting because the doctors were unequivocal that she needed to be there. We all needed to be there.
00:33:40
Speaker
And it was in part because they've seen these rather stunning, if you want to call it miraculous, we can use that word, instances where the presence of the healthy child has this remarkable, magical, demonstrable effect on the health and the mood and the success rates of the patient.
00:34:09
Speaker
And there are plenty of anecdotes that we heard about that, and then we experienced it ourselves. And just one day, Sebastian was in the transplant. We can talk a little bit about what that experience is like if you want, but basically it involves a lot of isolation and chemotherapy and suffering and all sorts of really intense medical procedures, handled beautifully by the professionals, but intense nonetheless. And he was just lying on his bed looking like
00:34:40
Speaker
looking real bad and he didn't want to play, he didn't want to interact with anybody and then his sister came in and it was like he just woke up and pretended that the whole being sick thing was just a let's pretend and jumped on the floor and started playing with her and I couldn't believe it and there's lots of stories like that.
00:35:01
Speaker
You know, now she's 12 years old and she's entering her teenage years, right? And so she's in a different phase of life and she's dealing with, you know, the normal issues with that. So, you know, what we want to do is, and again, this is something that I need to continue to work on. And I'm actually reading a book now at Felicia's recommendation on how to talk to kids so that they'll listen and how to listen so that they'll talk, which is a wonderful book.
00:35:26
Speaker
Is that the name of it? I'm writing it down. I have a 12-year-old and a 13-year-old. How to talk to kids so they will listen and how to listen so they will talk? Yeah, because good intentions will get you some of the way, but really there are communication skills that I'm sure some people are just naturally born with, but some people like myself have to acquire. We're all works in progress, especially me.
00:35:58
Speaker
that thank you for sharing that and the one of the things that also struck me when you know that you're talking about being a duke in North Carolina when you guys were there for a period of was it three months for one of the time periods at least how long did you guys actually move there for during because you had to be there for pre-testing kind of all those things then the actual transplant so there were several so how long were you guys in North Carolina at right the total part yeah so they tell you to budget a year
00:36:27
Speaker
And when I got that news, I mean, I did a double take. Okay. So a whole year of our life is going to be devoted to this medical procedure answer. Yes. Yes. We, so we had to kind of reconfigure and plan how we were going to, you know, move ourselves down there for a year and deal with all the housing and the schooling and the work situations, all that stuff, which all the lots of families have to deal with.
00:36:53
Speaker
And our plan was to go down there in March of 2016 to do a meet and greet. Felicia had already gone down there earlier and met the team and done all the work, really, including convincing me that it was the right thing to do. So we were originally going to go down there just as a meet and greet in March of 2016 to check out some of these things and lay the groundwork. The week we were supposed to go down there, Sebastian got an infection.
00:37:22
Speaker
Well, I should say he got really sick. He had a very bad issue with his lungs, which we thought was an infection for a long time. And so it was like, OK, he's even safe to travel. They said, yeah, bring him down there. He needs to be down here. So we went down there thinking we're just going to be there for like five days. That was March 17th, 18th, around St. Patrick's Day. And we didn't come back until Thanksgiving. Oh, wow. They saw him and they said, OK.
00:37:52
Speaker
The wheels are coming off. We were going to transplant them later this year. But actually, we've got to transplant them now. It's go time. Make a break. And so we were there for basically three months just getting them healthy enough to go into transplant. Because you have to clear the body of all infections and do 1,000 different diagnostic tests to make sure that the body can withstand the procedure. Then when it was healthy enough to go into transplant, we went in. We were in the unit for about two months.
00:38:21
Speaker
which is, I would say, around average. Some kids do it quicker. A lot of kids take a lot longer. And then when you get out, if you're lucky enough to get out, you have to stay within the immediate vicinity of the hospital for at least another, well, for us, it was what, another four months or so.
00:38:42
Speaker
for follow-ups and check-ups. Yeah, just daily check-up daily diagnostics, the blood counts, again we can get into the whole science of it if you want, but all sorts of additional post-transplant procedures to make sure that the new immune system which they're building from scratch basically takes and engrafts and grows and there aren't any severe complications, which there often are. And then if you clear that hurdle you can go home
00:39:08
Speaker
home home, but you still have to maintain that lifestyle basically for a full calendar year. That's how it was.
00:39:17
Speaker
And that's how it was. But during that time, this is one of the things I also want to touch upon is if we can go over also not only the resources, the medical resources that you guys had in terms of all the doctors that you guys went to. And I know you talk about different doctors throughout it, some maybe not the right match for families or not the right bedside manner or things like that in the journey.
00:39:40
Speaker
and so forth but then the nurses and the staff but also the people you reconnected when you guys lived when you moved to north carolina there were then people that you also used as your kind of core and support while you guys were there and
00:39:56
Speaker
That was another part. There's just things that kind of bring up that was one of the things that also warmed my heart was seeing those connections. Do you want to talk a little bit about that and how they helped you also with Lydia being in this new space? Certainly. So I was hesitant to go down to Duke because we didn't have a support system.
00:40:22
Speaker
We had a support system in New York. We have a support system in other places where we have family. Washington, DC, one of them. But we didn't really know that many people in the zoo. It was, however, again, Felicia, my wonderful and brilliant wife, strong wife, who said, we're going to go there because that is unequivocally the best place for him to be. Transplantation is a very specialized thing to begin with in transplanting a kid with this rare disease.
00:40:50
Speaker
is its own separate protocol. So really
Community Support and Gratitude
00:40:52
Speaker
there's only like two or three places in the entire country that have strong track records of doing this. Plus he didn't even have a good match. We had to use a special kind of transplantation using unrelated umbilical cord blood. So we were like really right at the edge of this realm of feasibility here. So we got to go to Duke. And for her, you talked about faith earlier.
00:41:18
Speaker
For her, it was both an act of rigorous research. It wasn't just blindly stepping over off the diving board. She'd done her rigorous research, and she also had the power of her faith that God was going to give her the strength for the journey. And she was correct. When we got down there,
00:41:43
Speaker
We were very, very fortunate to have reconnect with friends. I had one friend that I hadn't seen since basically since college who had coincidentally moved to North Carolina. Her name was Tina Merrill Bookwalter.
00:41:59
Speaker
That's where the Tina, that's why I knew that, I messed up Tim's name. I said, Dan, I said Tim, but that was because of Tina's name in the thing. Okay, so Tina. And Felicia had a friend from Chicago named Jessica Tang, who was actually in nursing school at Duke. And you'd think that people like that would help you out in some marginal way, right? You haven't seen people reconnecting, so you might,
00:42:29
Speaker
lend them a car seat or help them with recommendations for schools or something. But the degree to which these two women and additional people who we didn't even know, who just came out of the woodwork, who just gave of themselves with a degree of generosity, a degree of super altruism, and not just like one gesture, but like regular thing for months,
00:42:57
Speaker
It was just breathtaking. In the course of your life, you're going to find many people who disappoint you, right? People will let you down. I've certainly let people down. But it's just wonderful to see that that's not always
Social Interaction Difficulties and COVID-19
00:43:11
Speaker
the case. Some people will surprise you on the upside in some of your moments of most desperate vulnerability and need. And if you have the strength or the need to say, you know what? I need help.
00:43:27
Speaker
I can't do this by myself. We were very, very blessed to have all sorts of people come and give of themselves for us, but also for a child that they didn't know at all. And I'll be grateful for that for the rest of my life.
00:43:47
Speaker
And I'm sure that those type of friendships, even though they rekindled, I guess, during the situation, I'm sure that they've maintained because you guys went through something so hard also together in those months that you guys lived there. I'm sure that those friendships have...
00:44:04
Speaker
probably strengthened too, even though you guys hadn't been in contact with them for so long. So that's wonderful. Now, going back to friendships, how did other friendship dynamics shift during the times that he was sick, as well as just in general, because you guys did have to kind of live in this bubble, per se, to some extent too, with making sure that you were not exposed to certain
00:44:30
Speaker
Things right and as runny knows this or that like so how did you guys juggle that? with situations like birthdays or invitations that you might have and and so forth Yeah, well that was That was sad in a lot of ways You know Sebastian Couldn't really have friends a while. You know there's there's an age where
00:45:00
Speaker
Kids are just learning to walk, and they're putting everything in their mouths, and they're touching everyone. That's very dangerous for a kid with an immune deficiency. And we had friends that wanted to bond with him, and wanted to arrange play dates, and that happened. But it was so easy for it to get disrupted. If one of the kids, heaven for fend, has the slightest sniffle, we have to call it off.
00:45:30
Speaker
If a whole set of circumstances don't line up perfectly, you can't do it, or you have to do it under constrained restrictions. And as a result, for years, Sebastian's best friends were his Thomas the Train, Thomas the Tank Engine train set, I should say.
Isolation and Family Dynamics
00:45:52
Speaker
He had this big collection, and Felicia would spend hours on the floor with him.
00:45:58
Speaker
voicing the different characters and they kind of created a whole world for him that was a substitute for, you know, genuine human contact with his peers. And it was beautiful and touching in many ways, but also very heartbreaking. And we had, you know, again, and I think a lot of people can relate to this because of COVID now, right? We all have gotten a good taste of what it's like to live
00:46:29
Speaker
in a state of kind of compromised immune vulnerability and what that means, what social distancing means. Social distancing is a nice word and it sounds safe and it's something we all have to accept, but it's terrible. Social distancing is terrible. Yeah, the emotional impacts it has and
00:46:55
Speaker
Yeah, it's not a good thing. It's something we should, I don't want to preach, but it is something that we should try to get past as soon as possible. I just say one little thing. Since the book was written, I finished the book in March of 2020. Oh, right before. Sticking in. Yeah, right before this. And one of the things that happened in the year, my mom died.
00:47:24
Speaker
this past October and first of all you know she had a wonderful long full
Grief of Losing Mother During Pandemic
00:47:33
Speaker
life she was at peace at the end but I'll tell you this at the end she didn't want to talk and she didn't she was religious but she didn't really feel much of a need to pray what she wanted was just to be touched she wanted to be held and
00:47:53
Speaker
It's just very sad that a lot of people can't do that now. That was one of the nice things about being in Sebastian's transplant room. Felicia got into foot massage and reflexology, and you could always just leave it to hold. That makes a huge difference.
00:48:19
Speaker
Were you able, I'm sorry to hear about your mom and it's so recent too. My mom passed away as well, but were you able to because of the situations, were you guys able to be with her? Were you able to be with her during this time, even with COVID by chance? Well, I'll say a lot of people have had it a lot worse. The book is actually dedicated to everybody who's had it worse, and there's plenty of you that are worse. So with my mom's situation,
00:48:49
Speaker
again, you know, she had cancer, she'd had cancer for years. But she was doing quite well with it. She'd gone down to Costa Rica, my mother's Costa Rican, and she was in the habit of spending the winters in Costa Rica. And she was down there last winter, and she was supposed to come back in April, but then COVID happened. And they shut down the airport, you know, nobody was getting in and out.
00:49:13
Speaker
They did the same in Colombia. Yeah, they closed it completely. And so we were in touch and she was fine. But then in the summer, this is not covid related, but in the summer, her cancer took a real turn for the worse. And she was minimizing it. She, you know, like many mothers, she didn't want to be a burden. She didn't want to kind of lay her problems on us. She knew we had her own stuff. But then it became clear that she was in a bad way. So we had to get down there, which was this whole huge
00:49:42
Speaker
you know, bureaucratic nightmare getting there. And then when we got there, she was in the hospital and it's a good hospital. I'm not, I'm not cracking on Costa Rican medicine, but they had their own code restrictions. So we could only see her like five minutes a day. And she was in a room with six other people. But we were able to, they finally determined that they couldn't do anything for her and they released her on a Thursday.
00:50:11
Speaker
We got her home and she just kept saying how happy and thankful it was for her to be home. And the doctors told us that she was going to last, mas omenos, cuatro semanas, mas, you know, four more weeks. So we were geared up. My sister and I were there. We were geared up to, you know, kind of be with her to the end.
00:50:32
Speaker
She died the next day. Also, that has turned out to be one day. And I think, honestly, she was ready to go. She just wanted to be at home with her kids. And so, yes, it was COVID related. Yes, it was logistics of it. During this time. And it was tough. But I'll tell you this, dealing with the loss of a parent is
00:51:00
Speaker
Anybody will tell you, very tough, but at least it's somewhat natural compared to dealing with the seriously sick or fatally sick child. On a scale of one to 10, I would give my experience with my mother's passing an eight, eight and a half. You talk to other people, which I have, since then you find out
00:51:27
Speaker
these really heartbreaking stories. Yeah, my dad had a heart attack and my mom said I didn't need to come because he was getting better and then two days later he died and his final words were, where are my kids? My mom got sick in Los Angeles and so I got on a plane in Philadelphia and I got off the plane and I got a voicemail saying that my mom had died while I was crossing the Rockies. So all of these terrible things that can happen with the usual,
00:51:57
Speaker
not being able to be there for them or not being able to say what you need to say. I don't have to live with any of that. So I'm blessed in that way. I'm so glad you guys were able to fly there and be there with her. It does make a difference in the grief process as well as what you mentioned to before. I mean, you have been experiencing grief in other shapes and forms in your life, all these years as well.
00:52:21
Speaker
with the diagnosis and all the stress. So it kind of builds a muscle too, to kind of learn. And that's what I always tell people, don't compare like how somebody deals with one grief experience to yourself because you do not know
00:52:40
Speaker
everything else they've had to experience in their life to be able to handle, quote unquote, this situation differently than maybe you do, because they might have gone through a completely different journey and have different skills and different tools to navigate that. And you for sure have definitely developed a lot of those through the last few years with Sebastian's journey. Sure. Well, yeah, I mean, you know, I tried a lot of things.
00:53:10
Speaker
not just the modalities of self-help that we talked about before, but kind of mindsets and philosophy. Yes. You know, I tried denial. That didn't last too long. I tried stoicism, right? You know, I'm going to underreact to everything. I'm not going to let anything jam me up. I'm going to be a rock in the face of all this chaos. You know, thank you, sir. May I have another? And that didn't last too long for me either.
00:53:40
Speaker
It is, I think, a good mindset for like a soldier. Soldiers need to have certain amount of stoicism. For parents, or at least for me, it didn't last very long as a functional modality of coping. And ultimately,
00:54:06
Speaker
And again, I want to thank my wife for this, among others, and the meditators too. You have to give suffering its place. You have to accommodate it, and you have to understand that suffering can actually have purpose. By definition,
Meaning from Suffering
00:54:29
Speaker
suffering is not going to make you happy.
00:54:32
Speaker
But suffering can give your life meaning. Suffering can teach you things. And we all have certain limits. We shouldn't necessarily go out and gorge ourselves on suffering. But when it comes to you, you should, again, give it its respect, give it its place, and see what you can take from it.
00:55:02
Speaker
That is perfect for us to wrap up with that. I want you to share with us, if you can, then in that same line, then what have you discovered in your life that now has completely different meaning than what it did before you going through this? Like what shifted and you work a lot,
00:55:22
Speaker
And that was one of the ways, too, at some point in your journey, too, you probably dove into work as one of the ways of coping, too. But what are some of the things that have changed within you and around you from going through this suffering? And of course, now, by the way, Sebastian's healthy, and I know you guys probably still have to do other protocol and so forth as being a transplant.
00:55:52
Speaker
at this point, right? You still have to kind of be cautious, too. Yeah, he has to have yearly kind of checkups to monitor if there's long-term organ damage from the chemo, that it was part of the transplant. But otherwise, he's in perfect fault. In fact, he's got a bespoke Lamborghini immune system that is really tip-top.
00:56:22
Speaker
So that's one thing that we don't have to worry about. And again, I want to answer your question, but I just have to say, you know, I'm not comfortable giving the kind of, I've been to the mountaintop, come down with the sacred knowledge.
00:56:40
Speaker
You're not a sage. I'm not saying you're a sage. You're just a person that's gone through hearts. What has it done for you? Like what little things? It doesn't have to be something big. But like, again, I named this grief, gratitude and the grand between because I do feel like just like you said, you mentioned the word suffering for me. It's like, again, with grief, with anything we go through.
00:57:01
Speaker
that component of gratitude does come from the aspect of all the things we grow from going through hard things. We grow, we grow. And again, it doesn't mean that you're like, whoa, yeah, but there's something in which shifts and makes. So what has happened in your life? Well, you touched on a couple of things, which is that one thing is true.
Faith, Humility, and Strength
00:57:23
Speaker
And, you know, I need to be reminded of this all the time. That the ego
00:57:30
Speaker
I mean, you need some sort of ego to function, right? You need some sort of ego to survive in the world. But the ego can often be a real source of evil. It can be the source of all sorts of hellish decisions and miscalculations and overreactions. So that's one thing. There's one thing that will humble you. There's one thing that will
00:57:58
Speaker
teach you to kind of try to grow by becoming small. It's going through an intense medical procedure with your child. Another thing that it really taught me is that it gave me a different perspective on faith. And I'm not here to tell you that I found Jesus and he's personally saved me and stuff like that. What I will tell you is that
00:58:26
Speaker
I have a lot more profound respect for people who do practice faith, not because I necessarily think they've got all the answers to the big cosmic questions, but because it works for so many people who are at the end of their rope, who need strength for the journey, realize that they are at
00:58:49
Speaker
their own limits. They need something more. We all at certain times need something more. And faith provides that for people. So when you encounter people who are serious about the religion, whereas I might have been inclined to dismiss them as superstitious or closed-minded, I shouldn't think that way. There are often people who are just dealing with more than they can handle.
00:59:19
Speaker
and they're turning to their faith for some sort of strength, right? I mean, a lot of people turn to substance abuse, right? I mean, it's funny, Karl Marx said religion was the opiate of the masses. Well, now we know that it turns out no. Opioids are the opiate of the masses.
00:59:43
Speaker
And they're destroying a lot of lives. So religion is a wonderful and beautiful source of strength for many, many people.
Admiration for Medical Advancements
00:59:54
Speaker
Whether or not every single word in a sacred text should be read literally is a separate question, which I'm not expert enough to expound on. But that's really not the question. So that's another thing. And then the final thing is just an amazing, intimate,
01:00:13
Speaker
experience with the profound power of medical science. And again, partly because I was arrogant, I wasn't interested. When I was growing up, in fact, until I was 40, I hadn't had any medical health issues. I read about this. I thought of doctors like auto mechanics. And by the way, auto mechanics are a great profession. I'm not ripping on auto mechanics. I'm just saying,
01:00:40
Speaker
When you go to an auto mechanic, you think, okay, how long is this gonna take and what's it gonna cost me? And that's basically the attitude I had to doctors, right? But then when I saw what some of these people can do, and their amazing skills, and their amazing compassion, and also, I wanna say, their amazing tolerance for risk
01:01:07
Speaker
I mean, some of the stuff that they were doing down there, it's not too much hyperbole to say it was real rock and roll. They were, and a lot of American medical centers, broadly speaking, are considerably more buccaneering than other parts of the world.
01:01:29
Speaker
And that's one of the reasons why people from all over the world come to places like Duke, like the NIH, like several other very impressive medical centers I can name to see what they can do and how their field is growing so quickly. It's breathtaking. I mean, again, to talk about something that everybody can relate to, people, we came up with a vaccine for COVID-19 in nine months using messenger RNA.
01:01:59
Speaker
I mean, you know, I'm not saying people should read all the PubMed articles about it, but you just read a couple, you know, basic layman's terms, articles about how that vaccine came about. It is mind blowing. And I think oftentimes we're very dismissive of Western medicine or we're dismissive of Big Pharma, right? It's the most hated industry in the world. But some of the things that are getting done are really worthy of our respect, support and humility.
01:02:30
Speaker
Thank you. That does a lot. Now, how about in terms of the dynamic in your relationship after you guys even going through something so hard? How did you and Felicia, the bond now, you guys have been through probably the biggest test you probably would go through in your life. So how did that dynamic also then strengthen and shift with this tough time that you went through?
01:02:57
Speaker
It's a real challenge. We, you know, I talk about it in some detail in the book. You know, we were kind of welded together by this experience. We've needed help from time to time. The pandemic for the last year, you know, has, you know, kind of brought its own set of challenges. You know, Felicia was
01:03:19
Speaker
And it's really heartbreaking for a lot of women, you know, who are have all these dreams and goals and, you know, all this wonderful potential and brilliance and the circumstances of the pandemic have conspired to, you know, kind of force them to become teachers or even be at home because of the children not being at school. Women having to leave the workforce because of that.
01:03:44
Speaker
And so, yeah, so we're still together and I hope we'll continue to be for the long term. We still have issues. I still have issues. I still have stuff I need to work on, but I'm willing to do the work and we're going to know we've got these two beautiful kids and, you know, they deserve the best that we can be.
01:04:07
Speaker
And I love that you said that you're willing to do the work because you just had said before before all this, again, you were a skeptic to the therapy and all these kind of things and in medicine and such. But now that you've seen, you know, whatever, whatever. What is it called?
01:04:24
Speaker
Medications, yeah. Medications, yeah. So that's a big growth as well there. And then now you know which ore to get, depending on what you need, and to be able to row this family boat afloat, at least for now. Because again, we all are presented with different challenges at different times, and then we need a new set of tools at that point. But you've definitely gathered a few through the years.
01:04:51
Speaker
And it's also the discipline, which is again, you know, something that, you know, like I said, I kind of know what works, but knowing it and actually doing it and like making the time for it. I mean, you know, there's a number of points in the book where, you know, Sebastian's healed and I'm feeling better. So I think everything's fine. You know, I can just kind of pretend that I'm perfectly OK now. And that was not the case.
01:05:19
Speaker
And even in the last year, this pandemic has not been easy for us. We've spent six years of some kind of quarantine. So on the one hand, we kind of knew the drill. But on the other hand, it's like, really? Our reward for six years of this is a seventh year. And it's had some real impact on us. And we, like everybody else, have to really kind of take stock of the realities of it.
01:05:49
Speaker
just hunker down and try to do whatever is necessary to make it through, including me. This past year, I kind of
01:06:03
Speaker
because I was worried about losing work, right? Like a lot of people have. So I just kind of said, I'll take on as much work as I possibly can, because in a month, I might be out of work. And so I ended up doing a lot of work and providing for the family. So that's one thing we don't have to worry about. But all the other stuff, my program, working out, eating right, talking to people, getting therapy.
01:06:28
Speaker
Other things fell through the cracks. I've been slipping on that. Here I got a book coming out now saying that I figured it all out. That
Ongoing Growth and Mental Health
01:06:40
Speaker
pandemic stuff jams you up. It does. You just have to remind yourself that it's not easy, man. Life keeps coming at you. Life keeps coming at you and it's a good job to try to
01:06:57
Speaker
shot hold together for the people that you care about. But one of the things that a lot of us have as human beings that have been through a lot, and for sure this year, a lot of us have developed this even more is resilience, right? So the we go through hard things yet they call it having a rubber, but you kind of fall back, just bounce back up, you know, so that is one of the biggest probably
01:07:22
Speaker
Virtues I guess that will develop through these years and that our children will have for sure is a lot more Resilience through these hardships that have happened now Let's tell a little bit more about the book where people can find it March 2nd is the official release and so share about that and I'll share the the link on the I'm releasing it right right before your Your release so when people hear this they'll be able to buy it and just a few days later. Oh first of all
01:07:52
Speaker
I'm not sure I properly thank you for having me on the show and helping me talk a little bit about our experience about the book. Right, so the book is called More Than You Can Handle, a Rare Disease, a Family in Crisis, and the Breakthrough Medicine that Cured the Incurable.
01:08:10
Speaker
It's published by Avery Publishing, which is an imprint of Penguin Random House. And I have to say the team there has been so helpful and patient and tolerant and supportive. And so now, yeah, it's available now on Amazon and Barnes and Noble and all the regular places you buy books.
01:08:28
Speaker
I encourage you to put on a mask and go to a real bookstore and support some local bookstores. Make sure you sanitize your hands before and after. But it should be available there, too. And I'm going to, this weekend, I want to put together a little website so when people Google it, there'll be a page that will have some more information about that.
01:08:52
Speaker
Yeah, I was trying to find you and Felicia on even Instagram because I'm like, OK, when I start posting about it, how do I tag them? But I can only tag every book. So I'm like, I can't find you guys. So really, I will. I mean, I'm a Facebook guy. I could do some Twitter. I need to do Instagram. Thank you.
01:09:09
Speaker
Yeah, if you do then that could tag you. But it's been such an honor chatting with you and I'm so grateful that Casey and Maloney at Avery Books contacted me and put this together and being able to read your book, learn about your family and now being able to talk to you.
01:09:28
Speaker
and your
Conclusion and Book Promotion
01:09:29
Speaker
resilience and your family's resilience and just so grateful that Sebastian and Lydia are healthy and that you guys are well, so thank you. Absolutely. The one thing I'll say about the book is that obviously it's my story and it's very intimate and very personal, but I did try very hard to write it with bearing in mind that the readers have a million other things they could be doing with their time.
01:09:58
Speaker
So it's written in such a way that hopefully the reader will find it like worth their time and engaging. I mean, you tell me. It is. I told you I only have I told you I couldn't finish it because I was reading it on PDF, PDF. So I had to sit on my computer to read it. But now I have my hard copy as of today that I received in the mail. So I'll be able to finish it. But it's engaging because I mean, as I told you, there's all the the little things I was able to pull out and share here while we were talking.
01:10:27
Speaker
because there are these heartfelt moments, too, as well as just so much learning. Like I learned a lot of slangs, by the way, of all these like P W parent with like all these different slang. Are they called slangs? Seaglass? What are the acronyms and acronyms? Thank you. That's the word for the second. Plask. Yeah. Yeah. Plask. And then huddle, you know, like the H.O.D. H.O.T.L. Huddle.
01:10:55
Speaker
Yeah. What was it? What does that one mean? It means, hang on for dear life. Hang on for dear life. Yeah. So I learned a lot of the acronyms in the book. And then just really stepping into the perspective of being that parent with this. And I don't have that dynamic as of now, but
01:11:17
Speaker
being able to be in your shoes, I was able to feel that in this journey. And again, congratulations. And again, it's your first book. So it's very exciting, I'm sure, too. And nerve wracking, too. I'm sure everything at the same time. Yeah, I mean, there's a singular feeling of like having a long string of words with your name attached and you can't change a single one of them. And of course, I read the book, I see nothing but its imperfections and
01:11:44
Speaker
There's some definite things that I need to change and correct. I'll do that in the paperback. Just release. Even just with the podcast, that's one of the things I learned. The moment it's out there, when I listen back again, it's just to be able to know what to write for the... Oops, sorry. I'm like hitting my microphone. I'm talking with my hands.
01:12:06
Speaker
Um, for the little, you know, info on the podcast itself. That's when I re listened, but it, I, at the beginning it would be so judgmental of like, Oh no, I laughed there. I should have not, I should have not interrupted the person there and so judgmental. So, but then had to learn to just release it's out. It's going to have an effect on people's lives. That I think is the most important part, all the little other little things that you want to change. Those are just.
01:12:32
Speaker
the producer in you wanting to keep on fixing it. So thank you once again, Miguel. That's kind of you to say. And again, all my compassion and love for your audience and anybody who's dealing with anything remotely like what we've been through. I know there's lots of people out there doing it quietly, loudly, publicly, privately. You know, the book is for you.
01:13:10
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
01:13:29
Speaker
Thank you. Thank you so much, Rita.
01:13:39
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.