Jessica Fein | Creating Corners of Beauty Amidst Parent Loss, Sister Loss X2, and Child Loss

Amidst the challenges of her daughter Dalia's rare condition, MERRF Syndrome, this week's guest, Jessica Fein, also faced the crushing blows of losing her mother, father, and both sisters during the same trying period. Her story is a tapestry of sorrow and strength, woven with threads of love and loss that resonate deeply with the human experience.

The uncertainties surrounding her daughter's diagnosis added layers of complexity to Dalia's health, making it a daunting task to predict her future. Jessica's unwavering determination to advocate for her daughter, alongside the weight of her losses, paints a poignant picture of courage in the face of adversity.

As Dalia's health declined, necessitating intensive care and tough decisions, Jessica grappled with the harsh reality that not everything could be fixed. Her transition from seeking a cure to enhancing Dahlia's quality of life reflects a mother's boundless love and commitment to her child's well-being.

Throughout the episode, Jessica's reflections on witnessing her loved ones' pain and her journey through grief and healing resonate with a profound sense of vulnerability and resilience. Her ability to find glimmers of joy and connection (with herself, friends, and spouse) amidst the darkness speaks volumes about the human spirit's capacity for hope and strength amid hardship.

Jessica's story reminds us of the intricate dance between love and loss, woven together with threads of grace and grit. Her journey embodies the transformative power of facing life's most challenging trials with unwavering love, compassion, and a resilient spirit that shines through even in the darkest times.

RESOURCES:

• Book, Breath Taking: A Memoir of Family, Dreams, and Broken Genes
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If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.

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Transcript

Victoria Volk: Thank you for tuning in to this week's episode of grieving voices. I'm excited to share with you today my guest, Jessica Fein. She is the author of breathtaking, a memoir of family, dreams, and broken jeans. And hosts of the podcast. I don't know how you do it, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. Her writing has appeared in Newsweek, Psychology Today, The Boston Globe, Huffpost, scary mommy, zippy zippy Maeg, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler,

Jessica Fein: kebler, kebler, kebler, kebler, kebler, kebler,

Victoria Volk: kebler, kebler, kiabler, and and, and more. And, more. And more. And more. Jessicaiahiah, and to a rare disease in twenty twenty two. Her work encompasses hope and humor, grit and grace, the tools that make up her personal survival kit. And thank you so much for your time today and sharing your story with my listeners and myself.

Jessica Fein: Thank you for having me.

Victoria Volk: And so I actually would like to start out by taking us back in time to how this rare disease came about? How you learned about it? What your daughter's name is? First of all,

Jessica Fein: My daughter's name is Dahlia.

Victoria Volk: Oh, what a beautiful name?

Jessica Fein: Thank you. Thank you. Yeah. So I have a mama three, three children. My husband and I adopted from Guatemala. So we had had kind of a long and twisty road to parenthood and ultimately landed in Guatemala. And we adopted three babies, not all at the same time. Two years apart, and then two years apart. And Dahlia was our middle child. And what happened was in terms of your question regarding the rare disease diagnosis, she, from a very young age, seemed to be developing a little bit differently and a little bit slower than I thought was probably developmentally appropriate. Let's put it that way. So her speech was garbled. She was having balance issues. You know? I had that mother's instinct and tried to get people to pay attention, doctors, early intervention. But, you know, I was told just give a time, she'll catch up. And it wasn't until she was four years old that I finally got the attention of a doctor who said let's do a hearing test. And at that time, she was diagnosed with mild to moderate hearing loss. And that was a condition that would be able to be corrected by hearing aids. But there was a question which was why? Why did she have the hearing loss? Did something happen in utero? Did she have a virus early on? We brought her back to the Boston area from Guatemala at six months. So there were a lot of question marks. And we were sent for genetic testing, which really is a blessing because so many families have to fight for a really long time to get genetic testing. In this case, we got it very quickly, and that genetic testing led to a very clear diagnosis. Another thing that doesn't always happen. And she was diagnosed at that time with a rare degenerative mitochondrial disease called MIRF syndrome, which stands for myochronic epilepsy, ragged red fibers. Again, she was five years old, and that diagnosis seemed like crazy to us. We couldn't understand it, couldn't wrap our heads around it. She, you know, while I had been concerned, never my wildest dreams? Did my concerns lead me to the possibility even of something that grave? And she was the same person she had been, you know, before the diagnosis. So it was very hard to understand. And and even technically, Nobody had heard of this illness. We didn't know what mitochondria were. We didn't understand what a degenerative disease meant. And so then we took off on a very lengthy journey that lasted until she was seventeen. Daria died one week after her seventeenth birthday.

Victoria Volk: Wow. And do children typically I mean, what is the life expectancy generally of this

Jessica Fein: Yeah, well, so to begin with MURF syndrome is extremely rare, it's two in a million, so there's not really much data to go on. Also, Dahlia had a secondary diagnosis later on, which made her one of six in the world. So the thing with a rare disease is you just don't know. Now, when we look at MIRF syndrome, what we understand is that people can be impacted even within the same family in really different ways. So, for example, when I googled it that night, there was this long list of possible ways it could manifest. And it went everywhere from short stature all the way to death. So, you know, I did what any mom does, which is two things. Number one, I read the list and I decided it was a menu and I would choose, okay, she could be short. You know, I'll take that one. I'll take the hearing loss that I could deal with. But when it got to things like dementia and obviously truncated lifespan, those I wasn't I wasn't go anywhere near that. And I felt like, you know, look, I'm the mom. I'll solve it. I'll fix it. Right? Because that's what we do. We think we can fix things. And that was a big transformation for me. One of the ones I cover my book, which is understanding that there are things we can't in fact fix. What what do we do with a world that seems so wildly out of control? And how do we create any kind of meaning in that in that situation?

Victoria Volk: How did you do that?

Jessica Fein: Yeah. Well, it was a long it was a long journey because like I said, I decided I was gonna it. And remember, I didn't even know what mitochondria were. So, I mean, the idea that I would fix it was totally fantastical, but and I really did try to do everything I could and I became a big advocate and I looked for every study, and I wanted to, like, travel the world and look for some kind of, you know, miracle. But ultimately, what happened was Dahlia's disease being degenerative, was getting more and more serious. When she was nine, we were in the hospital for three months. And at that point, she had a tracheotomy which meant she had a hole in her neck with a tube that she began to that she could breathe out of because she had lost the strength in her lungs to breathe and she was ventilator dependent and she had lost her ability to speak and to eat and to move it walk it all. Ultimately, she lost her ability to move it all. But at that point, she was just in a wheelchair, she could move her arms, and she could shake her head in point and things like that. So she became too weak to participate in any studies. And I had a choice at that point because here was Dahlia, who just wanted to be a kid. Like, she wanted to have fun and snuggle and read and bake even though she couldn't need and live a life and have a childhood. And as the mom, it was my job to facilitate that. And I learned from her in that respect, and I decided that I could not cure this disease. I would do everything possible to try to make the symptoms less to try to understand the nuances of how she could feel better with everything she was dealing with, but also to understand that I had three kids who wanted to be kids?

Victoria Volk: I'm sitting here and I'm just thinking putting myself, trying attempting to put myself in your shoes. And as a mother parent, it's so difficult to watch your children like you said, the grief of wanting to give them their childhood, them wanting to feel like a child.

Jessica Fein: Yeah.

Victoria Volk: What were some of the things that I mean, I know you did your own research and what did that look like? How did you do that? And what were some of the things that helped you advice that people gave? I mean, did you connect with other parents who Yeah. Paid full time caregivers and you know, of

Jessica Fein: Right. So and first of all, yes. We seeing your child suffer is unbearable. And let look. Yeah.
I have a seventeen year old. And yesterday, I got a text a very healthy mainstream seventeen year old. Okay? And so he was at school yesterday and something happened in one of the classes and a couple of the kids were mean to him. And he texted me. I mean, he was not even that upset about it, but I was, like, wait, are they being mean to you? And and he was, like, kind of. And I was, like, you know, totally devastated if my stuff occurred. And I was, like, you know, wanted to, like, run into the high school and be, like, stuff. You know? So so that's how we are as parents. Right? So what do you do when you have, you know, this this very serious, serious, as serious as it gets situation? And, you know, I did not at the time connect with too many other people. I did become part of my do action, which is the mitochondrial disease advocacy and research education group. And I'm actually on the board of that, but I didn't at the time connect with too many other parents. I have since my daughter died connected with way more people in the community, partly because of my own podcast, partly because of my writing, So I now know so many people and I do know what a lifeline other people going through it can be. And it doesn't need to be people go, you know, it's not going to be in my case, other people whose kids have MRF syndrome. It's too rare. But it's other people whose kids are medically complex or have rare diseases, who are child loss, who, you know, have intense special needs, all those things, parents whose lives look so dramatically different than what they had envisioned. But at the time I didn't, and there were a few reasons. Number one, I didn't have time. I was working full time. My daughter was an eyes on patient from age nine to seventeen, which meant she was home but our home was an ICU of sorts and myself or my husband or a nurse trained specifically in her care had to have our eyes on her twenty four seven. He was very intense and I became a highly skilled medical provider of her medical needs. I mean, it was intense. And so between working full time and then being a full time caregiver and then trying to create this childhood and this environment for my three kids and also writing a book at that time, I didn't really have time to connect with many people in the community. So to your question of, what did I do? I first of all, so, so, so lucky to have a great partner and my husband. And that's not always the case. I mean, you have single parents going through something like this, or you have parents who aren't on the same page. And we know that more than fifty percent of couples who have a kid with special needs, let alone living on the precipitously, split up. So that that was a real blessing, you know. And for us, that we had each other. And I have some other, you know, really close friends. I couldn't I didn't see people very much, but people that I knew were there were my corner. And also my husband and I try to give each other some space to have some time to ourselves because that can so easily get lost in this situation. And I will say, because I know we're talking about grief in general, that a couple of things along this journey, I did lose all of my family members in terms of my family of origin. And that is part of my story in my book, which is losing two sisters and three parents, which happened a lot in the way. And so I'm very reluctantly familiar with all kinds of grief. And it's not just the grief of losing somebody, but it is other kinds of grief, what I call non hallmark kinds non hallmark card kinds of grief. Right? So ambiguous grief, for example, was something that I became very familiar with. I'm not sure if that's something that you've talked about much on your show, but, you know, there there are so much loss that can even precede or surround or be separate from loss that comes from a death. Howard Bauchner:

Victoria Volk: Yeah, I I just talk about grief. Whether it's I the labels might be helpful, you know, to understand it, but Yeah. As far as, like, healing and stuff like that, I don't know that I yeah. It's just all grief to me. Yeah.

Jessica Fein: But for me, it was a real eye opener because I didn't under stamp that there were other kinds of grief. And I didn't feel like it was appropriate at the time to be grieving when my daughter was here. It was in front of me. It was alive. And I really, for me, it was such an important thing to understand that there are other kinds of grief. And it is okay. And we can grieve a life we had imagined. And we can grieve a voice we'll never hear again. And, you know, all of these other kinds of things. We can grieve for somebody who's still alive. And for me, That was very helpful because once I understood that this was valid and that this was real and that this had a name, it took away some of the power and it allowed me to integrate that grief and to move forward more effectively.

Victoria Volk: So you lost three parents and your two sisters during that eight year span that you it was twenty four seven.

Jessica Fein: Well, my I lost I mean, my my first sister actually had died when she was thirty. So that and I was twenty seven. So that was the first major major loss. And then my mother and my father and my father-in-law died during that time as well as my older sister. That's a lot. It's a lot. And, you know, it wasn't like they were all together. It wasn't like everybody you know, sometimes when you think about a whole family dying, it's like, though, they were all in a car. Mhmm. I'll take that. It's not like a hierarchy. It's not better or worse

Victoria Volk: than ever.

Jessica Fein: But this was like one one offs. And it was also not like there was something that was running in the family. This was like just, you know, all all different kinds of things. So it it's it's pretty inconceivable. And yet, that's what happened.

Victoria Volk: And yet, here you said,

Jessica Fein: And yet here I sit and it's interesting because I know it sounds, it's like when I'm telling my story to somebody who I'm just meeting, it it's like I now I have written about it. I can speak about it. And it's so much to take in. And I have two friends who are therapists who said to me, my goodness, if you were to come and just be telling me all this, I'd be like, oh, she's I don't even know there were some like a diagnosis of like that can't possibly be true, that can't possibly be with that because it seems so crazy and yet when you're in something like this and underlying all of it is this intense care and intense situation and this life on the precipice, you you integrate it and and move forward. Like, there's no time to be to lay in the fetal position. Like, there's no time to be on the bathroom floor crying. Twenty four seven. You can't. You cannot.

Victoria Volk: One of the things that tends to go to the wayside when the life life, like, just throws, you know, the shit our way, basically, is our self care and just caring for the self. And so how what did that look like for you amidst all of that?

Jessica Fein: Was I'm really glad you asked that because and I actually talked about this in the book. Working outside of the home was important to me, and I did get judged for it because there were people, even medical caregivers in our home, who felt that it wasn't appropriate for me to continue working. And to be clear, I was the primary breadwinner and this life was expensive that we were living and nobody questioned my husband working. But I will say that when we talk about self care, Part of that to me was getting out of the house and working in a job that I knew how to do that I had been doing before I became a mother. That was very helpful for my identity. And that was also I think an important break during the day. Mhmm. And I think it was able to make me more present when I was home. So that was one thing. Another thing for self care for me was I'm I'm not like a big exerciser, but I did start to do pilates and just having this like twice a week that I would get out of the house and do this thing. Was also a nice break. And then also when we talk about self care, I think that the writing was important for me. You know, I wrote the book while at my daughter's bedside. And I think that that was a really important outlet. And it allowed me to tell my story my way, which meant I was able to make some order out of the chaos. So I think those were things, oh, the other thing for self care is that my husband and I as much as we could did a date night until COVID hit, we really kept that up. And it was complicated because in order for us to go out together, we needed to have two people at home, a nurse and a babysitter because we have these two other kids and also the nurse was not a babysitter. She does not be hired to entertain. So we would need a team of two. Which first of all is an expensive proposition. But second of all, we needed to make sure that they got a lot. I mean, I remember we had this one nurse and babysitter and the babysitter was like part of our family. And afterwards, she was like, I was really uncomfortable with that nurse. You know what I mean? So that's like a whole other dynamic. So it was complicated, but getting out of the house for about two hours on a Saturday night was such a sense of normalcy for us because our lives were so abnormal. So to be able to do that. And every night, every Saturday, we'd get in the car, and we'd look at each other, and we'd say, we've never needed a date more. And every Saturday night, it would be true, even more so than the week before, you know? And so So there were those things. I think it was having I think what all of these things did, whether it was the writing or the Pilates or the date night or whatever is my work. It gave me an identity separate from being the mom slash caregiver. And I think that's important, you know, for anybody in any situation.

Victoria Volk: When you were describing you and your husband getting into the car and recognizing that you never needed to date night more, I physically, like,

Jessica Fein: I just had this That is what we would do. Literally, it was that huge exhale and the looking at each other. And I always you know, it didn't even matter, like, if we were engaging on that date night or if we were just sitting there in if we had the one restaurant, it was close by, so we knew we weren't, you know, we do what we were gonna do. We would go there. We still go there pretty much once a week. And, yeah, just to have that that ability to be outside of all the other roles that had become such an integrated part of our lives.

Victoria Volk: I think that's a key point what you said is to put yourself in a different role. And in that moment, you too could be husband and wife.

Jessica Fein: Yeah.

Victoria Volk: And connect.

Jessica Fein: Mhmm. Exactly.

Victoria Volk: And one thing too, like, people may be listening and something that comes up for me as I'm hearing you share is many people who experience a child that is a lot of care or what have you. They have that support system around them as in the parents. Sometimes even the grandparents move in to help support and care and you didn't have that either.

Jessica Fein: We didn't have that either. And I will say that That was another thing I was dealing with. So my eldest sister had lung cancer, and she was diagnosed in the middle of all this. And I was kind of her primary person, and it was insane. It was so out of the blue and that was a whole other ride. So I was really torn. I mean, we talk about the sandwich generation caring for our children and our elderly parents at the same time. This was like triple decker sandwich or something because I had the sibling thing too. And it was really hard and I did I did, you know, I think that what I was going through may just compounded, was compounded by the other losses and those became so much more present for me because I so wanted to be able to just like you know, cry to my mom and and, you know, be be parented. Right? And and when for a while, I was taking care of my parents. And then when they weren't here, it was incredibly lonely.

Victoria Volk: And that brings me to the topic of friendships. I mean, you probably didn't even have time for friendships, and maybe the friendships you had fell away because you know what happens too.

Jessica Fein: I will say, I'm very lucky that I have a circle of friends, people I've been friends with since I was a kid. And the reason I feel so fortunate about that is because I feel like meeting new friends when you're going through such intense things. Is so hard. Right? Unless it's people who are also going through intense things. But it's too much to catch somebody up on. You know what I mean? It's just like it's a lot. So what we were going through was so unrelatable that people who knew me before, that became very, very important for me. Even knowing they were there, they weren't in Boston, you know, they're all over the place, but knowing that I had these people was important to me. And I think that we see in grief, right, how hard it is to maintain friendships because people are so awkward and they're so uncomfortable, and they don't know what to say. And God forbid, they bring up your kid's name, which is all you really want to talk about. You know? But they just don't know what to do, and this is such a problem is that we're just, as a society, so uncomfortable. And it always blows my mind because I feel like grief is the single most universal thing.
Like, every single person is going to be a grieffer. And yet, we're so awkward. We're so weird about it, where it should be the great unifier.

Victoria Volk: That's what I talk about. On the podcast, like, that's what I talk about. It is the one thing that unites us all that none of us differ on. Like, we all like, we are all creepers.

Jessica Fein: We are all creepers. Every single week of us

Victoria Volk: at a

Jessica Fein: hundred percent, like, And and with all other life cycle events, we understand how to be there, how to show up, how to sit with somebody in all other life cycle things, and yet when it comes to the thing that is the loneliness. And the thing that is the most universal, we don't know how to do it. We don't know how to show up. We don't know how to sit in the silence. Right?

Victoria Volk: And that brings me to the question of how were you taught as a child to grieve and express grief, and how was it what beliefs were passed down to you about grief in your household growing up?

Jessica Fein: You know, I don't really remember too much from growing up. What I remember with every cell of my being is the sudden death of my sister when I was twenty seven and she was thirty. And she was my best friend and we had been on the phone this morning, that morning, excuse me, and she died suddenly that afternoon. And that changed my worldview, more than any other loss. Even more, I will say, than the loss of my child because by the time that I lost Dahlia, which everybody will say, the worst thing that can happen is losing a child. And I'm not saying what's worse and not worse. I'm just saying that that first loss changed my worldview. Because before that, I saw the world through a bubble. Right? I was looking at a bubble every, you know? And that loss punctured the bubble. Then I saw the world through the clarity of the puncture, not through the hazy sheen of the bubble. Right? It changed everything for me. And I think that I probably then I was not living with my parents at the time, but I had them as models of how it is possible to carry on, which they both did. After losing their child. Right? And so it was forever altering for them. And they were absolutely different people on the other side of it and they carried on and they engaged in the world and they had lives, you know. And and I think that probably that somehow sunk in that it was possible to have an other side, to have, you know, life on the other side of what seems like, how can you continue on?

Victoria Volk: Is do you what's your sister's name? Both sisters.

Jessica Fein: Yes, my first sister and thank you for asking. Her name is Noomi and my other sister who died of lung cancer more recently is Rachel.

Victoria Volk: Do you speak about them in your book too?

Jessica Fein: Yes. Yes. I mean, you know, the book opens with the with the sudden death of my sister, Noomi. It's not a big piece of it, but I couldn't tell the story without starting with that because it was a life changing for me. And then Rachel's a character in the book because that happened much more recently and so out of the blue. I mean, they were both out of the blue, but one was like totally out of the blue sudden and then of course lung cancer we know can happen you know, when you're diagnosed with stage four lung cancer, often that means that you don't have a boatload of time.

Victoria Volk: What were the lessons that you learned from the loss? Of the grief of your sister your first sister. Know me since that was the one that kinda cracked you open. Yeah. What are what are the things that Dahlia taught you about grief then too?

Jessica Fein: Oh, two very different answers and so important both of them. With know me, what I learned was I never would nor would I want to get over the loss of my sister. This is not something I was trying to put behind me. It was something I was trying to figure out how to bring forward in a healthy way with me because she is such a core part of who I am and it was very important that I mean, I I would never want to not be grieving for her. Like, I can't even imagine that. So it was not how are you gonna get over it. It was how are you going to move along with it? And And that was, you know, a learning because I didn't know much personally about grief before that. Dahlia, I learned everything. I mean, here was a kid who lost everything that a kid has. She couldn't move at all. She couldn't speak. She couldn't eat. She couldn't run. She couldn't, you know, she couldn't do all of these things.
And she did not become bitter, angry. You know, all the things that I think I would become. She wanted to continue to have have joy. And and not in a, like, kind of denial kind of way, but in a like, this is my life. Like, I want to be out there. I want to be experiencing it. So so watching her do that made me realize that joy and sorrow can live side by side. They can hold hands. You can have grief and you can have beauty. And all of these things that I would have thought were mutually exclusive, fear and anguish and anxiety and, you know, moving or all the things. And then on the other side, you know, joy and fun and meaning and all these things like they can all be intertwined. And in fact, I think they become stronger in the presence of the other.

Victoria Volk: I'm just trying to imagine how, like, did you compartmentalize, like, when you would come into the room and, like, just I mean, because you essentially have to, in some respect, like, set your your stuff aside, right, to fully be present with her

Jessica Fein: Okay. I think I'm the queen of compartmentalization. I think I'm like, I don't even know if it's a good thing or a bad thing or whatever, but I do think it's key to for me to being able to function because, you know, here, the the situation was too big to take it all in at any time. It would have blown us down. We couldn't do that. I compare it to a pointalism, you know, the the kind of art where when you're standing up close, you just see the the dots. And you have to back up to be able to tell that it's, you know, a canoe or a field or whatever it is in the picture. We couldn't back up. We couldn't take in the big picture. It was too big. We had to be real up close and understand what each point was and and be attending to each point. And it wasn't until after Dahlia passed away that I felt that I could back up and begin to take in the enormity.

Victoria Volk: One of the things that I had a previous guest on, she is the author of always a sibling.

Jessica Fein: Yes. Andy Orangestein.

Victoria Volk: Yes. Have you read the book?

Jessica Fein: No. But I have it, and I'm about to speak, I I have an upcoming thing where we're gonna be together,

Victoria Volk: and she's coming on my show. So Awesome. Yeah. She is wonderful. And one thing that I didn't really think about until reading her book was that and she came on my podcast, was that our siblings are the people that know us the best who they're the longest relationships that we have. And so for you when you shared about Nomi and how that grief was harder, in some respect.

Jessica Fein: That's right because I have never been a day on this earth without her. Mhmm. Twenty seven years she was by myself. For, you know, the second that I came into the world, she was, like, celebrating me. And we, you know, they're they're that connection.
There's nothing like it. And I remember at the time and I will say, she had been married for five years when she died and she had been with her husband three years before that. K? So I remember so vividly thinking even right then, his goal will be ultimately to move on. Right?
His goal is going to be you know, here's a young guy and they had a baby. And ultimately, I mean, he'd always remember her, but this would end up being an eight year chapter of his life. And his goal would be to move on. And I say that with all the love in the world for him, but that that was the situation. Whereas my goal was to hold on, I'd never wanted to let her go. And, yeah, I mean, a sibling relationship, I think it's interesting that that, you know, Annie said that and and I understand it because you it is the longest relationship that they know you in a way nobody else will ever know. When you have a good, healthy, great, and in my case, when you have a sibling who's your best friend. And also like she shared too, they fill the gaps of your childhood. Like, totally. There's they know your childhood, like, nobody else. And that's why, you know, earlier when we were talking about my friendship circle, I've got some friends that I've had since, like, eight years old. And so I think they now have stepped into that role, and they know all the players you know, and they'll remind me. Remember when your mom, you know, because we all grew up together. And that's why those friendships are so important. I mean, you know, for other reasons too, but but right?
They are the the safekeepers of your history.

Victoria Volk: That's so true. Like, I have friendships since I was in five kindergarten. Like, we're still close and I cherish those. Yeah. For sure. What is the one thing that you would say to parents who and I know we kind of alluded to it or kinda started this podcast talking about how you have three children. But so many parents I know we're jumping around here a lot because you've had, you know, such a variety of losses, but when parents seem to struggle with the question who have lost a child, how many children do you have? And, you know, I

Jessica Fein: was like, well, do I say, do I even get into it if I had a child lost? Like, you know, if I have my kids with me and there's there's four, but I actually have five. And do I say I have five? Or where's the fifth one? You know? Like, how how do you navigate that? Yeah. So what I would say is to every parent, It is entirely up to you at any given moment. How you want to answer that question? If you are in a place where you don't feel that the person asking it is a safe place or if you're with other people or if you just don't want to get into it, say what you want. Say to if you've lost your third. That's fine. You don't have to feel guilty about that. This is up to you and it is how you are going to feel best and safest. I will say I am the mother of three. I believe I will always be the mother of three. I often think about it with somebody who had one child and lost one child, but But the inevitable next question always is how old are they? And then what happens is you find yourself apologizing to the person, listen, I'm sorry, this is gonna be really hard for you. Right? But I got because you know you're about to make them so uncomfortable, So it is a total minefield as is so much else.
The question, how are you? Is a total minefield? Right? Like, what am I supposed to If I'm feeling okay in that moment and I say, oh, you know, things are good, then you feel totally guilty. Like, how could I answer the question that way? Mhmm. Right? And I mean, there's so much we just there's so much we make ourselves feel bad about, and we don't need to do that. We need to do what's gonna be in that moment. And you can run into two people in the grocery store and feel like you wanna answer that question two different ways.
It's okay. It's up to you. You know? I will find myself I I I for me, I just can't imagine saying, I'm a mom of two. I can't. Dahlia is such a huge part of who I am, you know? Just like it's very, very hard for me when people say, oh, do you have siblings?

Victoria Volk: Yeah. Exactly. I was just I was thinking that too. It's it's kinda nice sort of thing.

Jessica Fein: Yeah. I always will have to I mean, I'm always I'm the youngest of three.

Victoria Volk: Yeah. Well, that actually brings up another question because I didn't assume you had more siblings, but I thought maybe there was a chance you had more siblings and I didn't ask. And now you're in now it's I

Jessica Fein: am orphaned. Yes. Yes. I know. And when my eldest sister was diagnosed, we had lost our parents and our other sister. And she said to me, I'm gonna be okay because no god would ever do that to you. And that's what she believed. It would be There's no way that reality that is my reality now that that could happen. And I suppose as I get older, it will be less shocking because it'll be more in the natural order of things. But I'm nowhere near the age yet when one would expect that, you know,

Victoria Volk: That just made me well up. Yeah. I know on your website, you talk about you mentioned the personal survival kit, and you've talked about I think you have alluded to Grace the grace you give yourself, the grace you give others. But what does hope and humor and grit look like for you in your healing?

Jessica Fein: Yeah. Well, hope, I'm I'm a big believer in hope. And I think what we hope for changes all the time, for a while I hoped for a cure, and then that wasn't going to happen. Then I hoped she wasn't in pain, or I hoped we'd be able to have a successful outing that afternoon or I hope, you know, but but the idea of living without hope is not compelling to me. And I think that we get to choose if we want to be hopeful about things.
And we get to choose what we want to be hopeful about. As for humor, I think you can always find humor. I mean, as long as you're willing to open yourself up to dark humor, there's there's humor. I mean, life is ridiculously humorous and, you know, ridiculously punishing and all the other things. But but I I feel like humor is important too. And and in my writing, I mean, that is probably one of the things I hear most often is, oh my god, I did not expect your book to be funny. You know, people will say, I expected to cry, I didn't expect to laugh this much. So, you know, fair, fair, you know, warning or promise to anybody who's gonna pick it up, hopefully, you will feel an array of things when you read the book. You gotta have grit to carry through. I mean, you have to be able to pull on the the the rain boots and get on, put yourself in the muck every day. And that to me was the grit. It was getting up and doing it again day after day after day.

Victoria Volk: And I would also want to ask because I I did think of another question. I'll circle back to that. But were there any books that you because you had books on your thing too and you're a avid reader and you're a writer. So are there any books that you would recommend that you found most supportive to you as you were going through all of this?

Jessica Fein: Yeah. Well, I'm a huge reader and I would say that for me. And, you know, when you talked about self care earlier on, I didn't mention, but reading for me. And and at the time, in particular, I just wanted to read fiction. Anything that's gonna take me out of my situation. So I would say that for me. And then in the book, I do talk about three other books. One is or or three other authors who meant a lot to me. One was James Baldwin, who whose life situation couldn't have been more different from mine, but wrote so much about people meeting tragedy and standing up to tragedy rather than letting it blow them down, and that was very important to me. Also Mary Oliver is an amazing poet, and her work just really, really was was very important to me. And then my father was a writer in reading his his words and understanding what he had to say about loss, having he had written a book about the loss of my sister. So that was very important to me as well. Yeah. It was and and I quote him quite a bit in my book.

Victoria Volk: That's beautiful. You also have on their cores cores corners of beauty? What is that? Yeah.

Jessica Fein: And that's a big part of my book as well, which is this idea that I'm talking about a letter that I received from my father. I he had left me some letters to read after he died. And we talk about creating a world of beauty and where that's like a really tall order. And none of us really can do that effectively. We're not that powerful, but we can create corners of beauty. That's something that's within each of our control. And that can be how you respond to somebody you see out in the world who maybe needs a hand. That can be how you make something out of a lousy situation, a horrible situation that can be having a candle light dinner in your daughter's room next to the beeping monitors. You've created a little corner of beauty. So corners of beauty is something that I think is in all of our control.

Victoria Volk: That that's juicy. That is really juicy. I think there's something there for you to really dig into and elaborate on if you haven't already. I've I'm not assuming you haven't, but if you haven't, like that that's very intriguing to me. That's I love that.
Thank you for

Jessica Fein: Thank you. Alright. So maybe that's book maybe that's the follow-up.

Victoria Volk: And also writing it down. And of course, because you had that on your website as well, writing it down, and writing was very much therapeutic for you. It sounds like at the bedside of your daughter. And Yeah. And having that emulated for you too by your father, I bet that was such a gift.

Jessica Fein: It really it really was. And, you know, one of the things that I learned from it was that his book was not a book about my sister, but he handed me the manuscript. He said he wrote a book about Noomi and I read it, and I said, this isn't a book about Noomi. This is about your know me. If I were to write a book about know me, it would be a totally different book. And that was really important to me. I'm sure if my husband were to write a book about what we went through, it would be a totally different book. Right? I mean, people are so different for each of us. And even the very same loss or the same situation, you know, two parents of the same kid or two siblings of the third sibling. It's a different loss.

Victoria Volk: Because all relationships are unique. Exactly. And so how can I ask this is my last question and because I you brought it up and I I actually wrote it down? Husband grief. Like, how Yeah.

Jessica Fein: He it's totally different. I mean, he would never in a thousand a million years have a conversation like we're having. Right? I find it I would talk about this all day long because for me, it's an opportunity to bring my family, my losses forward, to have them be present, to tell their stories, to allow people to get to know them, So it's very, very important for me. And I am so grateful for the opportunity to to do that. My husband is much more private, so he's very supportive of me doing what I want to need to do, but think he doesn't even like to come to my book reading. He still likes it in the background and maybe, you know, so he can sneak out if he needs to because he's a much more internal private person. And I think that that's, you know, we need to be able to respect that we're all gonna go through it in our own way. And there's no wrong way. And there's no timeline. That's a big thing. I see a lot of people. I see a lot of people out there who say, well, jeez, it's been x number of to, you know, why isn't that a person over it yet? And it's like, no. No. That's really why

Victoria Volk: I started this podcast was to, you know, banish the misinformation and the myths of grief and all these things that were taught like time heels and grief alone and replace the loss and, you know, these behaviors that we find ourselves doing to bypass our feelings and not feel them. Right? And to feel better in that period of time. And so, you know, what may have destroyed another couple sounds like it really just brought you two together and allowed you each to honor each other the losses and the way that you found helpful for you as individuals, and I think that's a beautiful thing. Is there anything that you would like to share that you don't feel you've got too that you feel is important?

Jessica Fein: No. I think that this this covered it. And you know, I love, as I've mentioned, connecting with people on these topics, and I invite people to connect me on social or well, first, please check out the book. You know, wherever you get your books. Whether that's Amazon or BookShop dot org, Barnes and Noble, breathtaking. And, you know, I'm having some really interesting conversations with book groups who are reading it together, and I'll go to any book group I'll zoom in or whatever if if people choose to read it with with some friends. And then, you know, yeah, my website is where I keep up to date on everything in terms of, you know, other writing I'm doing, events that are happening. So, yeah, you can check that out at jessica find stories dot com and that's fine at the EIN because post people hear it and think it's the other way. So just the fine stories dot com.

Victoria Volk: Yeah. And we say fine and grief recovery. We say fine as feelings inside not expressed and that is not you.

Jessica Fein: So That is that's alright. That's very funny.

Victoria Volk: I look forward to checking out myself. I love me some dark humor. So thank you so much for being my guest. I will put all of the links in the show notes and thank you for sharing your warrior story. Really? It's a warrior through grief. And, you know, we all don't have to do some grand things with our grief and share it with the world. But if you can connect with other people, like, and create those corners of beauty like you shared, That's healing. So thank you for sharing your story because storytelling is healing too. Storytelling is healing.

Jessica Fein: And I also, you know, I didn't mention I do a column in psychology today called grace and grief. You can find that online. I write a lot about not only our own individual grief, but how you can support others in their grief. So if people wanna check that out. Thank you so much. And remember, when you unleash your heart, you unleash your life, much love.