Before You Give Up, Hear Jessica Fein’s Story of Love, Loss, and Unbreakable Strength- EP 412

Brian Smith  0:00  
Close your eyes and imagine.

What if the things in life that cause us the greatest pain, the things that bring us grief, are challenges, challenges designed to help us grow to ultimately become what we were always meant to be.

We feel like we've been buried. But what if, like a seed. We've been planted,

and having been planted, we grow to become a mighty tree. Now open your eyes. Open your eyes to this way of viewing life. Come with me as we explore your true, infinite, eternal nature. This is grief to growth, and I am your host, Brian Smith. When I'm Brian Smith, I'm the host of grief to growth, where we explore life's toughest challenges and we uncover the meaning behind our journey. So whether you're joining us here for the first time, or you're a regular listener, I'm so glad that you're here. This podcast is about helping you navigate life's storms, to embrace growth and to gain a deeper understanding of who we are, why we're here and what comes next. Today, I'm honored to welcome Jessica fine to the show. Jessica is the author of breathtaking A Memoir of family dreams and broken genes, and she's also the host of the podcast. I don't know how you do it through her writing and her podcast, Jessica shares powerful stories of resilience and triumph, even in the face of unimaginable challenges. Her own journey as a relentless warrior is inspired in part by her dynamic daughter, who she tragically lost to rare disease in 2022 and her daughter's name is Dalia. Jessica's work has been featured in The New York Times, Newsweek, Psychology Today and more, and she's here to share the wisdom, grit and grace that she's gained along the way. So in this conversation, we're going to explore what inspired Jessica to write her memoir, and how it captures her family's journey, how she found hope and humor amidst heartbreak and learn to face what the unsolvable, the concept of ambiguous grief and understanding how it can help us navigate loss and why vulnerability can be a gift to your loved ones, and how it helps to create connection. So Jessica's story is one of courage and compassion, and I'm sure insights will resonate deeply with anyone who's faced life's toughest questions. So stay tuned as we dive into this heartfelt conversation, and remember you can join the conversation and connect with others at grief to growth.com. Grief to growth.com/community. After the broadcast, and with that, I like to welcome Jessica fine.

Jessica Fein  2:37  
Thank you so much for having me. I'm really looking forward to this conversation. Yeah, me too, Jessica. And whenever I have a parent on that's had a child that's passed in spirit, I always like to start off by tell us about your lovely daughter, Dalia.

Thank you, you know, and it's so interesting. I do feel like as a bereaved parent, we recognize each other and we know that, you know, saying their name and asking to to hear about them. What, what a gift that is to us, you know. So thank you for that. Yes, I had the honor to be Dahlia mother until she passed one week after her 17th birthday. Dalia was the sweetest child on the face of the earth, and I say that objectively, anybody who knew her will agree with me, and she was just absolutely full of mischief and love, and she had a really, really insidious decree when she was diagnosed with this horrendous disease, and she did not let that stop her. She was going to continue to live life to the fullest, and she showed all of us how that was possible. Yeah. So tell us how Dahlia came into your life. Yeah. So Dahlia came into my life and my husband's life. When she was six months old, we adopted her from Guatemala. We adopted three children, and Dahlia was our middle. We did not adopt them all at the same time. We adopted each of them two years apart, and in fact, Dalia was the youngest of the three when we brought her home. And we even got to meet Dalia when she was three months old, which was so amazing. That was the smallest little baby I ever, I ever had. It was only for two days, and then the court and paperwork and everything else took another three months. But we brought her home at six months, and she was just an old soul. I don't really fully understand what it meant, but it was just what that means. But it was just something about her, the way she would look at people, there was just she exuded something like, I know, a little bit more than you do, even as a baby. Mm.

Brian Smith  5:00  
Sounds familiar? Yeah.

So you, you adopted her six months and when, when was her diagnosis then? So her first diagnosis came at three which was hearing loss and and I think it's such an important point I like to make that we did not know about dahlia's disease when we brought her home and when we adopted her. And I do like to point that out, because some people think, Oh, you went and you, you know, adopted a child with very severe disabilities, and, you know, put, put us in kind of a different category of like, oh, isn't that amazing that you did that? And I'm like, No, that's not the story here of what happened.

Jessica Fein  5:43  
Dalia came to us, as I said, at six months. And

But finally they agreed. The doctors agreed to do a hearing test when she was when she was about three, slash four. We discovered that she had mild to moderate hearing loss, and that was really the beginning, because even though that was a diagnosis that could be corrected with hearing aids, there was a big question, why does she have hearing loss? Did something happen in utero? Is there something genetic like there was just question marks. Why should a young child have hearing loss? And so we were sent for genetic testing.

And you know, a lot of families, when you have a genetic disease, it takes years to get genetic testing. For us, it happened relatively quickly. So at five we got this diagnosis of Murph syndrome. And Murph is an ultra rare kind of mitochondrial disease. It's degenerative. It's really particularly cruel to have a degenerative disease diagnosis when you're five, when you're a little kid, because what's happening is you're learning and you're growing and you're developing and you're also losing, and it's like those two things are, it's like a tug of war. So Dahlia was diagnosed at five. We had no idea what that meant. No idea. I mean, we didn't know what a degenerative disease was. We didn't know what mitochondria were. We had no idea, you know, and, and that was the beginning of what became very much of an odyssey over the next 12 years.

Brian Smith  8:01  
Yeah, and I can't imagine that, that, that you said that that tug of war between having a child that's got a degeneracy as they're developing. So tell me how Daya, how did she cope with that,

Jessica Fein  8:18  
you know, for the first four years. So until she was nine, things were relatively and a lot of this is, in hindsight, relatively typical, and I use the word typical instead of normal, but what I mean is she was mainstreamed. We did the things that other families do. Yes, she had speech therapy and physical therapy and occupational therapy. Yes, she took more and more medication, and she ended up going from needing to wear ankle braces to needing to use a walker to needing to use a stroller to being in a wheelchair. So that was kind of how things were progressing. So to your question of, how did she deal with it? That was the hardest part for her, why my legs don't work like everybody else's. That's how she would say it, why my legs don't work, Mama, why my legs don't work. That's a really hard thing to have to explain to a kid, why my legs don't work. So that for her, was the thing that at that point, until age nine, was the toughest, and then at nine, everything changed. So tell

Brian Smith  9:34  
me about that. What happened? What happened at nine?

Jessica Fein  9:35  
So when she was nine, we went on a family trip. Actually was right before her ninth birthday. We went on a family trip, so at that point, we were still flying places. You know, we could do things, and we're in the Boston area. We went to Florida for spring break, and Dahlia caught a cold. Now, we all had colds, but when you have a disease, a degenerative disease. The kind that Dahlia had. There's no such thing as, like, a simple cold, right? So Dahlia had a cold, and she started to sound, really, just like, like a washing machine, you know, it just sounded, it didn't sound, right? And I was like, I don't want to overreact, you know, but I took her into the to the local er, and she was admitted

and that's when everything began to change in our lives. Because what happened was she developed a pneumonia and needed to be intubated there in Florida, in a hospital where nobody had heard of Murph syndrome. They didn't even have a metabolic specialist at that particular hospital. So now my husband and I, who you know, few years ago, didn't know what mitochondria were, are educating all of the doctors and explaining what's going on. And poor Dahlia was intubated and was just really, really struggling and really on the precipice. And all we wanted to do was get back to Boston, where we had doctors who knew what Murph syndrome was, and, you know, where we could figure this out, or so we thought, and that wasn't so easy. You know, you can't just get on a plane with a child who's intubated. And it's a whole other show, how I had to fight with insurance to get a medical jet. And, yeah, but we won't go there now, but I know it's what I love. People know it's in your book, and it's an amazing story. Thank you. Thank you. Well, we did ultimately get back to Boston, and I'll never forget that. You know that we got there and it was one week before her ninth birthday, and we were in the pediatric intensive care unit, and I said to the doctor, can you just promise me that we'll be home for her birthday? And he said, Well, I can't promise you that. I can promise you that you won't be in the intensive care unit on her birthday in a week. Well, that just shows a, how naive I was, and B, even the doctor didn't really know because we were in the pediatric intensive care unit to pick you for the next three months. So yes, we celebrated her ninth birthday there, and she was just really, really struggling. Every time they would extubate her, she would go into respiratory distress and that she would need to be intubated again. And it was this whole thing of trying to figure out what was happening with her lungs, why she was no longer able to breathe in a way that was going to sustain and pretty early on in that admission, they started talking to us about the possibility of a tracheotomy, which, for anybody who might not know, is when they put a hole in your neck and that becomes your breathing mechanism. And I really, really, really resisted that for a number of reasons, but the primary reason was that the chances are were that a tracheotomy would mean dolly would no longer be able to speak. I do want to be clear that that's not always the case when you get a trach in dahlias case, because it depends upon how much air you're able to push up, and it's a in her case, it meant we would probably lose her voice, and that wasn't something I was prepared to do, right? But over time, we were told, and we came to see and understand that Dalia was not going home from the hospital without a trach, that that was her only chance of survival. And so we did move forward with that. And we did, in fact, get to go home, but when she went home, she had lost a lot of functionality. So it was a three month period during which she lost the ability to walk, completely, to talk, to eat and to breathe without a ventilator. She became ventilator dependent. So now everything changed. One of the things about being a child on it with a trach and ventilator dependent is she became what's called an eyes on patient, meaning myself or my husband or a nurse trained specifically in her care needed to have our eyes on her. 24/7,

she couldn't be in a room by herself, because there's things that can happen. That trait can pop out the vent, can mouth. You know, every minute is is life and death. You're on the precipice. And so our house became a bit of an ICU, the medical equipment and the machinery and the medical personnel who are in and out. And remember, I had two other kids, and I had Dalia, who wanted to be a kid who wanted to be more than a patient. And so that was really what the challenge was. How do you create a life, a life that has some joy, a life that has some meaning in the face of such a horrendous situation, and that was from age nine to age 17, eight years of that, yeah,

Brian Smith  14:49  
I, as I was, you know, reading your book, and I know you've had other losses in your life as well. So you might want to tell us about that. Bring

Jessica Fein  14:58  
the list. Stars up to speed on that I was not a stranger to loss. The book actually begins with the sudden death of my sister who was my best friend. And anybody who has the blessing of having a sibling who's also a best friend can understand what that was like at age 27 my sister was 30. She died suddenly. She had a baby who was one. She and I had been on the phone that morning, as we were every morning, and that was the first major loss. I had had other losses, but that was the one that really changed how I saw the world, how I understood what it meant to not have control, how I understood how things could change in an instant. And in the book, what I say is, you know, I had been in this bubble. I think most of us are, until we experience something, and that loss punctured the bubble, and I now saw the world through the puncture, through the clarity of the puncture, not through the hazy bubble. So that was the first loss, and then I lost the rest of my nuclear family of origin over the time period in the book. So I lost both parents and my other sister, so two sisters and and both of my parents, yeah. So it was, it was a tremendous amount of loss. It was an understanding of what compounded grief means. Because, of course, each loss is experienced in relation to what has come before, right? Yeah,

Brian Smith  16:43  
yeah. Dahlia died, yeah. Let's talk about compounded grief. Yeah. What did that feel like for you?

Jessica Fein  16:49  
Well, I will tell you. I mean, if we jump all the way to the end when Dahlia died, all I wanted to do was, like, crawl into my mom's lap, right, or hold my sister's hand so you realize who's not there to hold you in your in your grief, because they're gone, right? And, of course, there's a bit of Magical Thinking, and maybe it's not magical. Who knows where I think? Ah, they're together. At least she's got people there wrapping their arms around her, but, but each loss, I think of it like, you know, if each loss is a string, I've got this ball of yarn, and it's so tangled, it's very hard for me to think about any loss without thinking of them all together, except that first sister, because when I lost my sister, Nomi, I didn't have those other ones to to, to, you know, take, get tangled up in it. That one was a little bit more pure, if you will. And then everything after that, even my mother's illness. So, so I've had, I've had illness, I've had sudden right, and with my mother, who who died from breast cancer, even that, even taking care of my mother in those couple of years. Nomi's absence was so profound, right? Because she would have been in that with me and my other sister. So So you see, they're all really

time for a quick break. Make sure to like and subscribe to continue to receive great content from grief to growth. And now back to the episode. Yeah, it's

Brian Smith  18:23  
interesting. As you were saying that you said ball of string. I, I was just talking with someone a couple days ago. We're talking about loss, and she said it's like cold spaghetti. And you know, when you have cold, when it gets cold and it all can congeals together, it's congealed,

Jessica Fein  18:36  
and it's just and it tastes yucky. And there's nothing, nothing, good about cold spaghetti. So yes, I like that one very much. Yeah.

Brian Smith  18:43  
So it's, it's, and I'm really intrigued by the name of your podcast, you know, I don't know how you do it, because we, you know, we've heard that. And so what is that? What does that mean to you when you hear that? Yeah, I don't know how you do it,

Jessica Fein  18:55  
well. And of course, you know, it's kind of tongue in cheek, because for so many years. I mean, this whole force of the book, I also was working full time in a big job, and my husband was working full time, and we had the, you know, the three kids, and literally, there was not a day that went by that somebody didn't say to me, I don't know how you do it. And you know where people are coming from, right? I mean, you know that they don't know what to say, and they're trying to acknowledge that, Hey, I see you. I get it. There's a lot going but, but how do you respond to that? Like, I don't know either or like, yeah, what choice do I have? Or you? I mean, there's just, there's no real way to respond to that question, even though, of course, there it's well intentioned, or excuse me to respond to that statement, even though it's well intentioned so my my podcast is conversations with people who, for whatever reason, have found themselves. Often on the receiving end of that statement, I don't know how you do it. And I will say it's not all trauma and tragedy. Some of the people who are on the show have just chosen really unconventional paths where other people are like, I don't know how you do that. You know, like somebody who sold her house and moved with five kids onto a boat and decided to have a life at sea, or somebody who traveled the world solo and landed in Central America building her own home, you know? So there are some stories that are just people who have these lives that are hard for other people to imagine, but, but the majority of the people on my show have been through, been through it. Let's put it that way,

Brian Smith  20:40  
yeah, yeah. And you know what I what I have learned over the years, and I've interviewed people like yourself that have been through multiple traumas, you know? And it's, it's, I look at the human spirit is so much more resilient than we give credit for and when, and as you said, when people say that, it's well intended, but as, as a person that's angry, for persons going through it, it can, it can being almost exactly the opposite. It's kind of like, well, your your love was must not mean as much to you as mine mean to me, because I would just die

Jessica Fein  21:13  
Exactly. It's the same thing as, you know, I can't imagine, right? It's like they people say these things, and it just erects a wall between you, because it's like, oh, well, okay, there you feel a little bit judged, just like you said, of like, I don't know how you do it. I wouldn't be able to so, so you know, like you said, I must love my people more than you do. It's like a no win situation if we are out there trying, trying to have a life in the face of this tragedy we feel, are other people looking at us and wondering, well, why she out? Well, I saw her, you know, at the soccer game. What's she doing there? Right, right? And then we we question ourselves, how can I be out there? How can I be doing that when you know my people aren't here, and I think we're all really good at making ourselves feel guilty, so anything that comes from anybody else surely just exacerbates, yeah,

Brian Smith  22:15  
well, I have to confess. I mean, I said that to you earlier, when we got started, I said I can't imagine. And we do say those things trying to empathize with the person, but you're right, it's and the weird thing I really want to illustrate is there's nothing really great to say when you're talking to someone in grief. There's no there are no magic words, and we all get really awkward. We all stumble. And even when I said that, I was like, okay, you know, I shouldn't have said that. So I feel

Jessica Fein  22:43  
that way too. And I listen, I just did my TED Talk, was all about grief literacy and what to say and what not to say, and I am awkward, and I'm sure I say things that rub people the wrong way, right? It's hard. It is absolutely hard. It

Brian Smith  22:55  
is. And I think that's that's something to acknowledge and say, Okay. And I tell my people are in grief. It's like, okay, we have to give other people grace because they're doing the best they can and and we have to try to, you know, really watch our language when we're talking to other people. And, you know, I appreciate you sharing, you know, your story, you know, with us. And again, it's like, Well, I think what one person can do any person can do. So when we say, okay, Jessica is really special because she's been able to get through this. You are, but we all are, and you and so I love these stories, because it also lets me know that, okay, I can, I can do this right? If someone, if Jessica could do this, if she could do what she did, I could do what I have to go through. I agree 100%

Jessica Fein  23:44  
and that's one of the things that people say, Well, what do you want people to take away from your book? And I say, Well, we are capable of much more than we think we are. Because I will tell you, if you had shown me a picture, a photograph, of what my life was going to be, I would have said, No way, no way. And I have evidence, not that anybody showed me a picture, but I have evidence that I would have said that when you adopt, you fill out, as you can imagine, reams of paperwork, and you have tons of interviews and home studies, and you know they don't just give a baby to you. You know you have to really be deemed qualified. And one of the things that we were asked is, What kind of medical conditions are you open to? And there's a long, long list, and it's everything you can imagine, and a million things you can imagine. And I said, none of them. I'm not open to any of them. Why would I? I'm not going to raise my hand for that, and that's why earlier, I pointed out that we did not know about dahlias disease when we adopted her. Thank God, because if I had known, I would have said, No, I'll wait till the next. I'll wait till the next, and I wouldn't have had my Dahlia so, you know, I didn't want that, and mostly it's because I. And think that I could handle it. Oh, I don't think I'm cut out for that. You're right, yeah. So that's what we learn. We learn that we all are capable of so much more than we think, yeah,

Brian Smith  25:11  
that that really struck me, you know, in the book. And again, I love the way you were so open with that, because I thought, first of all, I I wouldn't adopt that's I'm not that person. And if I did, you know, if you get to that point in the form, it's like, well, am I going to be judged if I say, you know, none of the above. So I didn't even want to tell my

Jessica Fein  25:31  
husband that I didn't want I was like, well, he's, what's he going to think if I tell him? Because he's like, Yeah, whatever. Sure, you know. And I was like, I don't really want that, you know. And I'm thinking, oh gosh, he's so much of a better person than I am.

Brian Smith  25:43  
Yeah, well, we, I want an easy life, right? I don't want to, I don't want to sign up for this,

Jessica Fein  25:47  
right? Look, I mean, I knew that adoption might come with its own challenges, just the nature of adoption, and plus, we had been through five years of fertility treatment. I was like, no, let's just, you know, now, let's have smooth sailing. We thought the hard part was over,

Brian Smith  26:01  
right, right? So your other, your other boys, the two are boys, right? So how are they doing now? Yeah, so,

Jessica Fein  26:12  
you know, it's really complicated. It's really complicated. And as you know, grief, even even the loss of the same individual hits each person in the ecosystem in a totally different way. And so that's why, you know, I learned this when my first sister died. I thought this is very different for me than it is for my other sister. Why is that both of us lost the same person? We both lost our sister. And yet, you know, each relationship is unique. Therefore the loss is unique. It meant something different. I lost my older sister. She lost her younger sister, you know, so, so we all lost our Dahlia but it it has meant something different, and it manifests differently. It does for me and my husband, and it does for our children. So, you know, they're, they're working to move forward every day and to integrate the grief. And some days it's easier than others and

and we carry on. But I will tell you this, they are incredibly, incredibly empathetic, inclusive, beautiful human beings, and I do believe that at least some of that is due to the fact that they are Dahlia siblings.

Brian Smith  27:23  
Oh, sure, yeah, sure. So what, what? And it's, again, it's really interesting that, you know, when we have a baby, you know, we, we don't, it's just the not luck, but we don't get to choose whether they're going to have a debility or an illness or whatever disability, but you made the choice that you like. Yeah, I want a healthy baby and you and you got Dahlia. What did you learn from having Dahlia in your life? What do you think that you would have missed if you hadn't?

Speaker 2  27:56  
How much time do we have? Because I will tell you I am the I am not the same person I was. And I say that in in I learned so much from Dalia, from being dalia's Mother, from meeting the people that I got to meet through her. So first of all, what I learned is, as I said, we're capable of so much more than we think. Second I learned that we really any, any illusion of control is really an illusion, right? Number three, we believe that our job as parents is to, you know, keep our kids happy and healthy. That's not always possible. It's not always let me, you know, kiss your boo boo and give you a band aid, and Mama's going to make it all better. We can't fix everything. There are some things in this world that we cannot fix, and that was a really hard lesson for me, because I had thought, well, if you put your mind to it and you work hard enough, you can get what you want, you can fix what you know, no. So you have to find other ways to have, quote, unquote, control. You know, you can't change certain things, but you can change, you know, what the next hour is going to be like with Dahlia what are we going to do? Are we going to snuggle up and read a story? Are we going to, you know, do an outing. You know, the most ordinary things that families, that parents and kids do, are extraordinary. And I realized that, because there was a victory in doing these very quote, unquote, ordinary things, it makes you look at everything differently, everything and I had a strength in me that I didn't know. I mean, look, I would have said I was a strong person. It's not that this was like a shock to me, but in terms of what, what we all in the family carried, but mostly what I learned from Dahlia. Is you can have the single worst thing, not even the worst thing you can imagine. Because I'll tell you, I never could have imagined some of what we went through with Dalia. I mean, some of it was really beyond imagination, right? And you can smile, you can be happy. You can find moments of joy. You can create beauty. All those things are not mutually exclusive, and I never would have understood that. I would have thought, How in the world can I have can I be in a situation where my daughter lost her ability to blink and I had to tape her eyes shut so that her corneas wouldn't dry out when she was sleeping? How can that be my reality? And we can be, you know, giggling and being silly. How can that be at the same time? And it can be and then those moments of joy or happiness or simplicity become precious,

Brian Smith  30:55  
yeah, yeah, oh, wow. That's so profound, and that's something that's us. Those of us have lost children, I think we I don't say, I always hesitate to say, all or anything's universal, but it seems, from the people I've talked to, it's kind of universal. It's like I never thought I could get to this point, you know, because it feels like the worst thing possible that can happen. It feels like it's overwhelming and it can I would think that you would have felt overwhelmed many, many times thinking, Okay, this has got to be that this is the limit. Yes,

Speaker 2  31:36  
oh, my god yes. It's like, what more can can I be asked to carry? Shouldn't there be a ceiling on suffering? Right? Right?

Brian Smith  31:50  
But, but what you said also, though? And again, it was as I was reading the book, those moments of joy, those moments of of norm, normalcy, the things that we tend to take for granted, you don't take for granted anymore. That's

Jessica Fein  32:02  
right. That's right, because we were living on the precipice. Literally every moment is life and death. So if you think about that, I mean even just think physically, of what that does to you when you are braced for impact all the time. So being able to just take a moment and breathe. And by the way, that's one of the meanings of the book, breathtaking of the title. There's a few, but that's one,

Brian Smith  32:28  
yeah, yeah, yeah. So yeah. So talk about the different meanings of the time, yeah, yeah. So

Jessica Fein  32:34  
it's breathtaking two words. And I loved the title very much, because it had so many different meanings. I mean, first of all, Dahlia breath was literally taken from her. That was the crux of the of the disease, right? So, so there's that meaning, and then there's the one I just described, which is the learning to be more in the moment, which was not my forte. Much happier being 10 steps ahead. And I had to say, no, no, let's be here now, and take that breath. And then the third has to do with beauty. And, I mean, it's Dalia herself, who was just so beautiful, both ex, you know, the both physically, but so much more important too, she was as a human being, was, was really just so, so beautiful. And learning to create corners of beauty, which is what I talk about in the book, which is what we did. We weren't going to be able to change the trajectory. We didn't have that kind of control. So how did we create those corners of beauty, those corners that were breathtaking? And so for me, those are the meanings in the name.

Brian Smith  33:35  
Yeah, I think that it's beautiful, and it's so it's so multi faceted. So in terms of you've learned so much through this, through this experience, what are your thoughts about this soul planning? Do you think that maybe this was planned at some level? Have you thought about that I you mentioned earlier, or just say, maybe it's magical thinking to think that they're together. So have you allowed yourself to go there? Well,

Speaker 2  34:04  
I'm so glad you asked, because that's really what I'm interested in right now, which is trying to understand, and this is a project I'm working on right now, so we'll have to, we'll have to connect offline on this, but really trying to understand what what might be possible, and what do other cultures believe? And you know, how can I explore and experiment, not only with within the tradition that I was raised in, which I'm Jewish, but how can I explore other ways that we might be able to connect. And some of that is actually connecting, you know, whether that's mediums, etc, and some of it is the other ways that we feel connected to our people.

Brian Smith  34:50  
Yeah, yeah. And I always hesitate to ask people that question, but I if everybody that's listening that knows me knows what my feelings are on it, and it's something that I. Into after my daughter passed. By the way, when I first heard of this concept, I'm like, That makes no sense, but I see again, like you said, I would not have chosen, and you didn't. You didn't choose to have a child that had this disability of this disease. But you got what you got, and then so much joy and beauty, you know, come out of it. And it's all mixed up, right? It's not like, it's all it's all joy, and it's like, we, you know, we're like, oh, yeah, I'm so glad that happened. But you can, we can start to see on some level, even while we're here, that maybe this makes sense and a bigger picture, yeah,

Jessica Fein  35:37  
and I'll tell you, even in a simpler way that I can wrap my head around it is thinking about these three children who are born in a country I had never been to, right to people I didn't know, you know, in a world that was so wildly different from mine, and who are my children, and that, to me, cannot simply be accidental. My husband believes that if we had been matched with other kids, or if our journey had taken us elsewhere, that one day we'd be somewhere, I don't know, an airplane, a shopping mall, and we'd see our kids, you know, Dahlia, JoJo, Thea, with some other person, and we'd be like, what are our kids doing with that other family? I mean, that that, you know, we all came together. It was not, it was not, I don't think the luck of the draw.

Brian Smith  36:32  
I have to believe that myself, as I said, Well, you don't, maybe know this, but I'm an engineer, so I'm and I think, like, how does, how did this work? How did things work? You know, synchronicities, etc. But then I think about my life, and it's like any one little turn that would have been different if I hadn't. I had a migraine one night, and I was, I was supposed to go to this dinner, and I I almost stayed home. And if I'd stayed home, I wouldn't have met the person that got me the job that led to me meeting my wife, and I'm like, if I just that one little thing, if I'd done differently, I'd be living a totally different life. Right now, I know I

Jessica Fein  37:08  
think about this all the time, and it is kind of fascinating, though, because you wonder, what would that other life be, right? I mean, you know this, am I grain? Do I stay home? Do I not stay home? So that that's such a small little detail of one night's decision that changed everything. I almost didn't go to University of Michigan. I was going to go to Northwestern. I did orientation at Northwestern, and at the last minute, I chose to go to Michigan. Okay? I mean, that's a bigger example than a migraine, but I would be a, I'm sure I would have a totally, different life, I'd be a different person, because I probably, you know, so, so it does make you wonder, yes, is there some master plan at work? But the flip side is, what are all these other versions of me that would have been?

Brian Smith  37:51  
Yeah, well, I kind of think, like, I don't know it's, we're kind of pondering some really deep stuff here, but I feel like this is the way it had to be there. It couldn't be any other way I can't, can't imagine what that other life would be like. I wouldn't have my daughter Kayla. I would not have had my daughter Shayna. I, you know, I it would be a totally different thing. And I have, what I enjoy about doing this and sitting down with people like yourself, is, is being able to see the beauty, even with the pain, even now. Before say, we cross over and we get all the answers, I think we can get some of those answers now, and that's what I really love about again, you sharing your story, because it helps me realize, okay, yeah, it seems crazy, it seems random. It seems like there's so much stuff here that people say, Well, why would I possibly choose this? Why would I choose to have this, this really crazy disease that no one's ever heard of, but I've talked to people like you and my friend Don who had a son named Willie, who had listened cephalia, or listen definitely, yeah. And you know, Willie was never able to speak or walk or anything. But when I see the beauty that came out of, you know, the life and it complicated her other kids lives and stuff too. But you know, every parent I've talked to has had to say, I would not trade it. I would not, I would not trade, you know, a, quote, healthy child for the what I learned from that person,

Speaker 2  39:18  
yeah, and I mean, same with me, and I have have the beautiful fortune of knowing so many families who have have been through, you know, rare disease and just, you know, all kinds of things. And because we adopted, I feel like mine is is so for me, it's so clear cut, because it's not like, Okay, well, you know, this is the child that I gave birth to, and this was what, you know, this really was it could it could have, they could have called another person on, you know, on the list, and said, we've got a baby fears. It was all and, and when, when Dahlia was diagnosed, that very day, I said to my father, mm. Thank God we hadn't known. Because I know I wouldn't have signed up, and I know she was my daughter, and I was her mother, and that was there. There's no question, and I would not trade it. And even then, even you know, on the day of diagnosis, I didn't say, Oh, my God, Woe is me. Why? Why? You know it was no, it was, thank God, thank God, I didn't know so that we could be together. So we talked

Brian Smith  40:25  
about this a little bit before, but I want to go into a little bit more. Emily, I know you describe yourself as a problem solver, and people listening can see, you know, you went through the infertility, you solved that problem, you went to, you know, you adopted these kids. You're and you, you are very much that that person, right? That person that says, I'm going to take this on. How do you how do we balance that with acceptance, like knowing when to let go that I don't have control over this?

Jessica Fein  40:54  
Yeah, it was hard. It was really hard because, because I decided I would cure mitochondrial disease, right? Right now, remember, I did not know what mitochondria were. I was in marketing. I mean, it's not like I had any any credentials or reason to believe that I personally was going to cure this incurable disease. But, you know, that's what we do, and I, and I, at the very least, I was gonna have get Dahlia cured. And I did think, if we work hard enough, right? And we've all seen, like, Lorenzo's Oil or, you know, that's what just came to my mind. Yeah, I had dahlias tincture. I was gonna be, it was gonna be dahlia's tincture, you know. And I, I mean, I spent so much energy trying to get her into these clinical trials and trying to, you know, call these dog reading every study. I mean, this became consuming for me, sure. Because, how could it not? How could I not follow every single solitary little seed of a path, right? And meanwhile, there she is wanting to, like, play shoots and ladders and not, you know? So, so you have to start to think about, what am I doing to try to fix it while here I have my child who wants to be with mom and I, and I did, I put so much energy into trying to figure things out, and it wasn't until we finally did get into a clinical trial, and we had our plans for going. It was going to be in Washington, DC, and we'd go every month, and we had to figure out a whole bunch of logistics, and we had plane tickets, and we were all ready to go. And very much at the last minute, she was it was determined that she was not well enough to participate in the study. And that, for me, was a real turning point, because that meant, okay, we need to turn our attention to what is happening now, what is happening today, because she's not going to be in the study. She's not going to be, you know, she was. Her disease was progressing quite a bit. And my husband, what was, is not as much of a fix it person. He is so he's so much more able to really be present in the moment. And we balanced each other out. You need both, you know. But I needed to look to his example a little bit more. I needed to look to his example of how is he being right now? And it wasn't about acceptance of, okay, I'm throwing my hands in the air and giving up, which is what I had understood surrender to be, right? You know, the concept of surrender, which is so gorgeous to me, I thought it meant I'm giving up. I will never surrender to this disease. This disease isn't going to win, you know. And so how do you learn that? It means we're going to be okay with what's happening now. We're going to be here, we're going to follow Dahlia lead, and we're going to trust a little bit, and thank God because I was able to spend a lot of time being with her in the moment, and those are the memories that nourish me now.

Brian Smith  44:08  
Yeah, thank you for sharing that. I think that's a again, that's, it's, there's certain things in life you just have to kind of feel your way through. There's no, there's no right answer, right No, of course, we're not just going to roll over and give up, but it's and the the word surrender or acceptance, and especially in American society, is almost a dirty word right now, I will, I will never surrender. I will never, I will never give up. But it's also, you know, again, accepting, accepting that this is what it is, and how do I make the most, the most of what what it is? Shayna had nothing like like dia but Shayna had rheumatoid arthritis. So, you know, I remember the day we got the diagnosis of that, and we're like, Okay, this is our healthy child. She's like, 10 years old, and she loved to play basketball. And suddenly her fingers and her wrists were just hurting all the time. She had a super high tolerance for pain. And I realized now the denial that my wife and I were going through, like trying to figure out, you know, what's going on. And then the rheumatologist told us, I'm like, wow, I don't want this, you know. And then she was diagnosed with a heart condition, and

Jessica Fein  45:21  
right? And you realize that's like the hearing aids for me. I thought the hearing aids was, it was like, such a huge, huge, huge thing, right? Now I'm like, Oh, sweetie, you know, to my younger self, right? Yeah. And when she first had to get AFOs, you know, braces for her legs, I remember I said to the to the person who was prescribing these and fitting her for them. I was like, how she can wear tights, you know? Like, this is where my head was, because I was just like, Mom, thinking about her daughter wanting to go out and wear tights and like, she's going to have these big, bulky leg braces, you know. So we look back, you have to give yourself compassion, because I look back at that version of me and I think, oh, boy, yeah, we're

Brian Smith  46:05  
all I think we're all that. And I loved what you said about when your sister know me's death, kind of burst that bubble, because we all have this this naivete about the world, and we think that things happen to other people, you know, they don't. They don't happen to us, they don't happen to our family, and we lived our lives in denial until something comes along and burst that bubble. And it's going to happen to all of us. It's some people get to go longer than others, and some people it takes more to burst the bubble than it does for others, but it's coming for all of us, and that's not, and that's not again, I don't think that's necessarily a bad thing, because, you know, we could see the how it gives us opportunities to grow, and gives us opportunities I've experienced and to start to cherish life. I think, I think we become, I think I've seen people become more grateful. And it's really interesting. You think it had it takes something terrible to happen to make you be grateful.

Jessica Fein  47:05  
Yeah, I agree with that.

Brian Smith  47:09  
So what's, what's, what's been the response? What's been the most surprising response you've gotten from your book or from your from your podcast? Well, from

Speaker 2  47:17  
the book, I would say it's a couple things. Number one, people say, I never expected to laugh. So I like that, because, you know, I feel like, you know, there's, there's humor in anything, right? And people say I felt I read it in, you know, one or two sittings, I felt like I was having a conversation with you. So, so that's very gratifying. But the most gratifying thing is when people say, Boy, I love Dahlia. I really got to know her, you know. And because, you know, look, when you lose somebody, you think, and I imagine you feel this way too, it's like, oh, man, the world missed out. They didn't get to know her. All the people, like nobody else is going to ever get to know her. But then when you do something like share stories through a podcast or write a book, people get to know her, and that, to me, is so gratifying. And the other characters in the book too, who I've lost along the way, I feel like sharing who they were with people is a really meaningful way for me to continue to make sure that their legacy survives and that other people get introduced to them. Yeah,

Brian Smith  48:24  
yeah, absolutely, I completely agree with that about about the legacy thing, and it's really interesting, because Shayna was 15 when she passed, and we homeschooled our girls through eighth grade, so Shayna was only in public school for a couple of years, and I was really surprised, like, I think, like, 700 people probably turned out to her, her memorial service, which we had no idea we had this little place in the in the church, and my wife and I were greeting people. And we greeted people for like, two hours. We were just standing there for COVID first, and now everybody couldn't even get in the room, because we had no idea that many people idea that many people were coming. And so what I realized that that was like she had more of an impact than, you know, I had, I had any idea. And, yeah, and it's been almost 10 years now, and her volleyball coach, you know, sends us Christmas cards. And so that's really, you know, gratifying to know that that our that our children, even at that that tender age, have that impact, yeah, definitely, yeah. And in dahlias case, well, so many who knows, many people that her story is going to is going to impact and inspire, you know, and encourage people that are again going through things that sometimes we feel like this is too much, you know, I can't handle this. And I can look at Jessica and say, Yeah, I think I could do it. And they look, look at where she is, and, wow,

Jessica Fein  49:53  
yeah, well, I hope so. And I hope that people, you. Read it and feel like they do, maybe get a little bit of strength and know that we can't. We can't write our own story until we do, yeah, but we can't write our own story. But, you know, we get to figure out how we're going to live with the the story that has been given to us. Yeah, well,

Brian Smith  50:23  
that's, that's an interesting concept, too. You know, writing around story and how much of that, how involved are we are not, and that's, that's a matter of belief, that's a matter of faith. But what we do know is we can control how we respond to things

Speaker 2  50:36  
exactly. And I will tell you also, I mean, for me, writing was a really good way to be able to also control the narrative, right? Because I wrote this book during Dahlia life, and things were really swirling out of control. So writing it give gave me a little bit of of that control over the narrative.

Brian Smith  50:57  
Yeah, at what point it's interesting, because I, when I read the book, I expected it that you had written it after she had passed, but at what point did you write it in her life?

Jessica Fein  51:06  
Yeah, so I will tell you that this book was agented and sold to a publisher during Dahlia lifetime, and it originally had a different ending. It ended at this very joyous scene where we celebrated dahlias Bat Mitzvah and I was happy about it ending on such an uplifting scene. And then I did have to go in and write the Epilog, but I wrote it, most of it at her bedside. You know, in the last few years, she spent a lot of time resting. Mitochondrial disease zaps your energy completely, right? And like I said, she was eyes on I was there. I was sitting in the chair next to her bed and doing a lot of writing at that time.

Brian Smith  51:49  
Yeah, yeah. Well, I again, it's, it's a, I highly encourage people to get the book. It's, it's a great you said it's surprising. There's humor in it, but also, we've just touched on the surface of what you included in there. Get to know, to get to know Dahlia better, people should check out your podcast. So what would you and I know we've been talking for 45 minutes or so, but if you could tell someone that's listening, that is dealing with, like a diagnosis, a terrible diagnosis, that and this just overwhelmed right now, what's so? What's something you'd like to say, except for them to understand? Yeah,

Jessica Fein  52:32  
so if I may, a couple of things. Number one, I would say it really, really can be valuable to have people in your life who have been through it, and I don't mean it has to be the exact same thing. I wasn't going to meet other people whose kids had Murph syndrome period, but to meet other people who were living with these lives they never would have imagined, who are living on the precipice, who understood, I mean, you and I, who met, you know, five minutes before coming on this show, you get each other in a different way, because we've both been through something so profound and so similar. And so I think finding people who can be, who can understand on that personal level, I think, is so important, because as as supportive as your friends and other people will be, they don't know in the same visceral way what you're going through. So I would say that. I would say number two, if we're talking about the diagnosis for a family member, as compared to the diagnosis for you yourself, is to try to take even moments, if that's what you can get, to have some aspect of your life that preserves your identity outside of being a caregiver, to remember who you were before and to remember Who you will be after. You are caregiver, you are front lines, and you are other things too, and not to feel guilty about that, because I think that that makes you a better caregiver, makes you able to be more present. So I would say that's the other piece of advice.

Brian Smith  54:17  
Wow, Yes, awesome. I 100% agree with both those things. You know, it's interesting. I'm part of an organization called helping parents heal, and we're all parents who have had children passed in the Spirit. And you know, sometimes we divide ourselves up like sudden loss, cancer, suicide, no whatever. And people say, I want to go someone's gone through Exact same thing that I am. But we do have that thing in common, that we do have a child and spirit, but as as supportive as your friends and family can be, some of that, they're going to surprise you in good ways and in bad ways. Oh yeah. So yeah, speak to what your experience is on that.

Jessica Fein  54:58  
Oh yeah. Well, I mean, I think what. Interesting is there will be people who show up and become part of your inner circle that you never would have expected, and then the people you would have thought, some people just can't do it, right? They're too uncomfortable, they're too scared, they're afraid. It's contagious, right? Yeah, and, and I don't mean that literally, even in terms of a sickness, but I mean, people think grief is contagious, right? And so, you know, you find out who your people are going to be. And I will tell you there are people who showed up for us. For example, being in the PICU for three months. There are a couple of people in my life who came to that hospital every single solitary day I was there. I will never forget that. And it is not, I wouldn't have expected that, actually, of anybody, but, you know, to be there and to be in it with me at that level, and it is a scary place. I'm the pick you. There's probably no sadder place on earth in the pediatric intensive care unit. And there were people who showed up every day, and then there were people who didn't show up at all. They just couldn't, you know, you know, so you remember those things, yeah. And by the way, I will tell you, because I get people all the time, you know, in the grief space, and they'll say to me, Well, I don't know there's this funeral. Go. When in doubt, show up. Show up. Get over yourself and your own discomfort and your yes, it's uncomfortable and it's awkward, it's also uncomfortable for the person going through it. But you show up because it will be remembered and it will always I mean, I am so grateful. And you show up, you don't have to, you know, just show up. If you're in doubt, show up. Yeah,

Brian Smith  56:39  
and you might say something awkward, like I did earlier. We all do, we all do, and we, I love what you said, you know, it's just, it's just showing up, and it's saying, I'm just here for you, you know, I'm willing to listen. Because people that are in grief, they need, we need to express ourselves, you know, we, you know. So you don't have to really say a whole lot, either you could just show up and listen,

Jessica Fein  57:04  
yeah, I always say, don't just do something sit there. Yeah, yeah. I love that. Yeah. I love Yeah. And I just did this TED talk about this. You know, there are certain things that are offensive, right, like, so, yes, we all are awkward. We're all going to be bumbling. We're all going to say things we don't mean. But please don't start any sentence with at least, yeah, yeah, because that's like saying, Look on the bright side, right? However that sentence ends, at least she lived a long life, at least she wasn't in pain, at least she didn't have kids. At least she had kids. At least she, you know, no, yeah, minimizes the depth of what the Grievers going through. That's not on you too.

Brian Smith  57:41  
That's, that's, that's great that you said that. And it's interesting, because we talked earlier about, you know, your sister with sudden loss, and your other sister that wasn't so sudden, and your mother. And, you know, because we, we all tend to like we compare griefs, we'll say, well, well, you know, at least you got to say goodbye. Well, at least she didn't suffer, you know, all those things, right? And it's a very human thing, because we want to make people feel better. But I realized, because when Shayna passed, she was, it was sudden, and then she had a friend who lived around the corner, and hers was extended. She had glioblastoma, so she died over a period of months, and it was wild, because Shayna passed before she did, and I realized, okay, they went through hell and we went through hell, and there's no reason to compare the two, because while we didn't get to say goodbye, you know, we also didn't have to go through what they went through watching their daughter suffer, and both are horrific, and we don't need to, we don't Need to choose which one's better or which one's worse. Yeah,

Jessica Fein  58:43  
agreed, and I've seen it every way and and you know, when my sister know me died three months before her, my cousin died, and my cousin was 35 and she was diagnosed with something, and we, just as you're describing, you know, we watched this illness progress, and you know, in the immediate aftermath, we were all sitting around going, which is, you know, which? Which is better? Is better? Is it better to know? Is it better not to know? Right? Right? It's, there's no better or worse. It All. It's all sucks. Yeah,

Brian Smith  59:09  
it does, and it's okay to, it's okay to to admit that you know that it's, it's, it does suck in and very real way. But I love the the hope that you're giving people that we can, we can endure this and not and more than endure it, we can come out on the other side, and we can, you know, we can. We can thrive, and we can carry on our loved ones legacies. So Jessica, remind people of the name of your book and where they could find out more about you.

Speaker 2  59:41  
Thank you. Yes, the book is breathtaking, and Jessica fine. F like Frank, e, i n and you can get it wherever you love to get your books in whatever format. So we've got print and E, book and audio. I have my podcast. I'd love for people to tune in. I don't know how you do it. And visit me. You know on social, I love connecting with people on Instagram or Facebook, wherever you are, or just check out my website, because that's the hub of everything. That's Jessica fine stories.com

Brian Smith  1:00:10  
Awesome. Well, thanks for being here today. Thanks for doing this. Thanks so much for having me. All right, have A good Day, too.

Transcribed by https://otter.ai