I Don't Know How You Do It

Take a Breath: Living and Grieving Fully with Jessica Fein

December 26, 2023 Jessica Fein Season 1 Episode 50
I Don't Know How You Do It
Take a Breath: Living and Grieving Fully with Jessica Fein
Show Notes Transcript

Host Jessica Fein turns the tables for episode 50. The ineffable Effie Parks of the award-winning "Once Upon a Gene" podcast returns to the show to interview Jessica about how she does it. 

They talk about:

  • The rewards of openly sharing personal experiences for growth and survival
  • Integrating joy and grief 
  • The value in naming ambiguous grief
  • How a long shot is still a shot and the worst thing that can happen when you take it
  • What to do when there's no light at the end of the tunnel
  • The power of podcasting

Join Jessica's launch team for Breath Taking: A Memoir of Family, Dreams, and Broken Dreams. DM here at https://www.instagram.com/feinjessica/

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Music credit: Limitless by Bells


Jessica Fein: Welcome. I'm Jessica Fein, and this is the I Don’t Know How You Do It podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. 

Welcome to the 50th episode of I Don't Know How You Do It. Before we get into today's episode, I want to extend a gigantic thank you to you for listening to this show, telling your friends about it, and joining this incredible community.

I also want to thank every guest who has shared their story on the show. We continue to learn so much about what makes people able to do things that seem undoable, and I feel really [00:01:00] privileged to have had conversations with such inspiring people. Now, for something a little bit different, for the 50th episode, I invited our very first guest back to the show to interview me.

You might remember Effie Parks, who is the host of the award winning Once Upon a Gene podcast. I asked Effie to return to the show to talk about my I Don't Know How You Do It story, and I am so grateful she said yes. 

Jessica Fein:: Effie, hi! 

Effie Parks: Hello, Jessica Fine. How are you?

Jessica Fein: I am so happy to be back here with you. 

Effie Parks: I know.

Every time I get a chance to talk to you, whether it's on Instagram or a random phone call really quick or on a podcast, it's always one of my favorite things.

Jessica Fein: Thank you. I feel the exact same way. I'm so grateful to you for allowing me to turn the tables and for interviewing me because throughout the last, I cannot believe, 49 episodes [00:02:00] leading to today, which is the 50th episode of my podcast, I have had a lot of people say to me, well, what about your story?

What about your story? And so I knew I was going to tell it at some point, and of course, hopefully, one of the ways that people will learn about my story is by reading my book when it comes out in May. But I wanted to tell it on this podcast, but I was like, well, if I'm going to do that, I need to have Effie interviewing me.

And it was just perfect. I love the book end of, you were my first guest, and now I'm going to be being interviewed by you for my 50th. It just felt right.

Effie Parks: I love that so much, and I'm so honored that you asked me. It really means a lot to me. 

Jessica Fein: Well, the floor is yours, and I'm an open book, so to speak, so let's go.

Effie Parks: Love the open book. Um, yeah, remember that book's out in May. Um, okay. Hi, Jessica Fine, welcome to your own podcast. I'm so excited to talk to you. I love and respect you so much and I'm so happy that you're in our community and I understand your podcast audience not getting a lot of [00:03:00] information from you because as podcast hosts we are always trying to make our guests shine and it's a beautiful thing.

So I'm really excited to turn the tables on you so everyone can know what a beautiful soul you are inside and out. So can you tell us a little bit about the inspiration first behind starting your podcast? I don't know how you do it. 

Jessica Fein: Absolutely. So, as you, I'm sure, experienced, for so long, people would say to me, literally every single day, I don't know how you do it.

And that started years and years ago. And even when it was just, I had these three kids and two working parents, but then as our situation became more and more complicated, I would hear that so much more. And I even wrote an article about it for Huffington Post years and years ago because I felt at the time, it's such an awkward thing to hear.

How do I even respond to that? When somebody says, I don't know how you do it, am I supposed to say, thank you? Am I supposed to say, I don't really know either? Like, there was no answer. There was no [00:04:00] response that felt real to me. And that nugget had always stuck with me. Then I started to think about why do we say that to other people?

What is it about certain people's lives that seem so unimaginable to us? Because I have to say, I have found myself saying that very thing to people. And then of course I want to like reel the words back in because I'm like, Oh gosh, how is it making that person feel? But I think the thing that really intrigues me is, Why do we look at some other people's lives and think, I don't know how they do that?

Why do we think their lives seem unimaginable? So that's part one. And then part two is, How do we do it? And that's really what I've been searching for, is to find the themes, whether it's people who have been dealt really, really tough hands that they weren't sure they were going to be able to thrive during or live through, or people who have chosen really unconventional paths, but how do we do it?

How do the people whose lives are outside of the norm do it? What are [00:05:00] those themes that we see across the board? And that's been the most interesting thing to me and to have those actionable insights. I mean, episode one, the oxygen tanks, you know, that is a great, great tip. And I have now hundreds of tips and hundreds of pieces of advice from the last 50 episodes of How People Do It.

Effie Parks: I love that. Is there anything top of mind that you've learned just in the last year of how you do it?

Jessica Fein: That's an excellent question. So I think that for me, this last year has been really about a huge creative output. So when I reflect on this year, I'm kind of blown away by just how much I put out in the creative space and more important, how much I loved it.

It was obviously getting the book to where it is to the final edits and doing all of that and then launching this podcast and doing 50 episodes and, you know, all the other stuff that's behind the scenes, building a website and I started a writer's [00:06:00] salon, which I love and I became a psychology today blogger.

So, you know, all these things. I feel like creativity builds on itself. And once you step into that realm, you own it more and the ideas keep coming. So for me in that regard, it's been a tremendous year and when I think about how do I do it, I think that a lot of it has just been putting myself out there.

Like I don't have anything to hide anymore, you know? So that's I think how I do it. And I used to be very private, not anymore. And I think that a lot of what I've been able to do that I feel proud of has been moving to a place where I'm comfortable sharing. And where I hope that my sharing is landing with people and maybe making them smile or nod or get a new idea of something they hadn't thought of before.

Effie Parks: That's a fabulous answer. I love what you said that creativity builds on itself. And I think that would resonate with so many people who didn't necessarily think they were creative people before doing an endeavor like [00:07:00] this. It's very cool. So, let's kind of go back to the beginning a little bit and learn a little bit about your family.

You're an adoptive mom. You have three kids, so let's hear a little bit about your family.

Jessica Fein: Yeah. So, a mom of three incredible, incredible humans. Our path to becoming a family. was long and twisty and bumpy and not quote unquote, the norm. We spent a long time trying to kind of go the conventional route and that wasn't going to be our path.

It turned out, but what was interesting for us is once we realized that once we decided to step off and go down an alternative path, and for us that was international adoption. We were like so into it and thought anybody who just has sex and gets pregnant and has kids like how boring is that, right? We just loved this idea that we weren't having a family, we were making a family.

And that just like my husband and I found each other, our kids and us would find [00:08:00] each other. We adopted our three children from Guatemala. We were in Guatemala five times. And what's interesting is a lot of people will say, why international? Why Guatemala? Once we decided to adopt, we loved the idea of international.

That just felt really good to both of us. And when you feel so right about something, and since we were in agreement, we didn't have to explore it very much. We were just like, yeah, this is what we're doing. We were very, very open to different countries. We didn't have any personal connection to Guatemala.

And we really learned about what the systems for adoption were like in each of the countries. And this was a long time ago, and everything's changed. Most of the countries have shut down, but at the time we really liked the way the process worked in Guatemala. So that's how we decided to move forward in that way.

Effie Parks: Wow. Okay. Well, I know the central theme about the last several years in your life is obviously your family [00:09:00] situation and especially beautiful Dalia who had MERRF Syndrome. So, can you tell us a little bit about her and the disease that affected her?

Jessica Fein: Yeah, of course. And you know, it is interesting that our kids were not biologically related.

And I get this question a lot, because of course, when you have a child with mitochondrial disease, you quite likely have more than one child with mitochondrial disease, right? I mean, this is a genetic illness. So, in that respect, it was a real blessing for us that our kids weren't genetically related. But Dalia, so we met Dalia when she was three months old, we met her in Guatemala.

We obviously fell in love with her, you know, immediately. But the way the system worked at that time, you had to wait, you had to go and meet the child and do some paperwork. And then come back some months later when you got clearance to actually complete the adoption. So we brought Dalia home back to Massachusetts when she was six months [00:10:00] old.

She was our youngest baby. She was just amazing. She was the light in the room. She was feisty from the beginning. She was stunning. She had a. full head of hair from the time she was born. I was giving her my hair accessories even when she was a little teeny tiny baby. It was like she had a fur hat on top of her head, you know?

And then as she started to get a little bit older, she was developing and walking and talking, but it wasn't coming with ease. Her development felt like it was very different from what we had seen with our older child. And of course, you know, you're not supposed to compare your kids to each other, but I just always had a feeling.

And as we hear from so many people with the diagnostic odyssey, I felt like there was something that wasn't quite right. Something that needed to be looked into. Of course, never in a million years did I imagine that that something would turn out to be this evil, [00:11:00] insidious monster of a disease. So, I reached out to the doctors and they said, you know, wait, give it time, she'll catch up.

I had early intervention come out three times. They were like, she's just on the lower end of average, she'll catch up. I won't take you through all the gory details, but ultimately she did get the diagnosis at five of MERRF Syndrome, which is an ultra rare kind of mitochondrial disease. And that diagnosis both changed everything in our lives and changed nothing.

Because for the first many years of the diagnosis, first three to four years, she was still walking and talking and in mainstream school. We had a lot of appointments, physical therapist and occupational therapist, and we started to give her more and more medication, but no doctor could really tell us what the progression was going to look like.

And so while we knew that things were progressing, she was also learning and developing. She was moving in two directions at once because she was learning and [00:12:00] taking in and growing, but then she was also losing at the same time. That was really tough, but it was also so murky. We didn't really know anything.

It was like there was this huge umbrella over us. But that was it, like there was always like a bit of a shadow because of that, but we didn't know what the trajectory was going to look like. And we didn't really concern ourselves on a day to day basis with what it might look like. And then when she turned nine, actually, she spent her ninth birthday in the hospital, that's when everything changed.

She caught a cold and as a lot of us rare parents know when our kids catch a cold It's not a simple thing. It's not this is uncomfortable and you're gonna be better in a couple of days For Dahlia, that cold landed her in the hospital, and she became intubated, and we were in the hospital for three months.

What happened was she lost a lot of functionality during those three months, and she ended up needing a tracheostomy. [00:13:00] After that, when we got out of the hospital, that's when everything changed. That's when Dalia could no longer walk or talk or eat. That's when she needed the ventilator around the clock and when she needed to be watched by my husband or me or a trained nurse 24 7.

And that was from when she turned nine till she passed away one week after her 17th birthday. 

Effie Parks: When you explain it as going in two different directions, I think that there couldn't be a more perfect explanation, especially of these beautiful kids who have these progressive degenerative disorders. But I think people can also kind of look at that in so many different ways in their own life.

Because I think that you know when there's sort of that push and that pull, right? And as a parent, you have this uncertainty, which is sort of a gift and a challenge, especially of the future. And I think one of the first times I met you, you spoke about grief, but you especially [00:14:00] spoke about different types of grief.

I think losing a loved one is the only thing that comes to mind when we talk of grief, but you kind of encompassed all of these different kinds of grief, which I thought was so fascinating. And you especially spoke on ambiguous grief. And I wonder, when at the time when Dahlia was growing up and when she got sick, when was that timeline when you really discovered this concept of ambiguous grief?

And how did it apply to your parenting strategy, to your day to day, to your sort of self care and self preservation? And what did it mean to you?

Jessica Fein: That's it. Just a little question. 

Effie Parks: I rambled there in the beginning. Sorry. I was thinking through it. 

Jessica Fein: No. Well, I'm so glad you asked that because it is so important to me to spread the word about ambiguous grief.

And the reason why is because I didn't know it was a thing. I was living it, it was dominating much of my day to day experience, and I had no idea that there was such a thing. Like you mentioned, I thought [00:15:00] grief was what we feel when somebody dies. I call it now Hallmark card grief. It is the kind of grief that you can go to the store and buy a Hallmark card for.

And I had experienced a huge amount of that kind of loss. So I was very familiar with grief. I mean, my story overall is one of so much loss. And then, what happened was, I was actually invited to give a talk on ambiguous grief. And I thought, of course I'll give a talk, I always will say yes. You know, I'd like to spread the word about all this kind of thing.

So I said yes, and then I got off the phone and I went and I googled, what's ambiguous grief? And it was such an important moment for me because what I learned is that ambiguous grief is when we grieve the loss of somebody who's still with us. That loss can be cognitive. It can be physical. So what I mean by that is, let's say somebody is a prisoner of war.

They're still alive, but they're not physically with you. Okay, but that's not [00:16:00] what I'm talking about in my experience. It's when the person is not with you in the way they used to be. So, a lot of people will experience this with people in their lives who have dementia. I had always prided myself on not grieving my daughter while she was still alive.

I would say, if you asked, I'm looking at my daughter right now. There will be time and place for grieving, but that time is not now, and I am not going to waste one minute of my time with Dalia grieving. I would have said that and I would have meant it, but what I didn't realize was our lives were totally different in every single way, emotionally, physically, spiritually, intellectually.

Everything was different. And there were some really, really intense feelings that I kind of pushed to the side because there's no time for those. And when I realized that ambiguous grief is a thing, then I could begin to integrate it because now it had a name. Now I understood, Oh, of course, of course, [00:17:00] there are things that I'm grieving and that's fine and to be expected.

And now I know that so I can deal with that. I can integrate that and we can carry on. And it was such a huge change for me. And I would just say it's also different from anticipatory grief. A lot of us understand that one more readily because it just seems to make sense. When you know that you are going to be losing somebody, right?

You're grieving at that time. You're grieving because you know it's coming. This is different. This is a grief that you almost feel ashamed about. Why in the world am I grieving when my person's alive? Actually, you're grieving because the life you thought you were going to be living, you're not living.

The life you thought would be your future, that's not going to be your future. And you're grieving the loss of this person who isn't how they once were or how you imagined they would be. 

Effie Parks: Yeah. You were definitely one of the very first people who brought that concept to my awareness. And when I [00:18:00] realized that I could grieve the things that I thought would be, The permission that it gives you really does sort of wash away all that shame.

And it just gives you this relief and this freedom and this openness to do that thing that you were so bent on doing, which is enjoying the time and the experiences that you have now and loving that human being that's so perfect, but also aching, right? And it also reminds me of another little tidbit that you always share about how grief and joy can coexist together.

Can you talk a little bit about that? 

Jessica Fein: Yeah, absolutely. I feel so strongly about this concept because I would have thought that if you are dealing with the most horrible, insidious, day to day existence, how in the world can you find joy? And likewise, if you're happy and joyful and everything's going great, then you're probably not dealing with the real heavy stuff.

This idea that these two things can sit together and hold hands, joy and grief, that they can be together, [00:19:00] really did allow me to feel everything more fully and to be able to function more effectively. And I think that the joy and the grief or the sorrow, it wasn't just that they coexisted. I think each was made more powerful because of the other.

My joy that I experienced with Dalia was so big. Would I have had that same kind of humongous joy if everything was la di da? I doubt it. Would the quote unquote normal things have brought me so much happiness if it was just the way things were? There are just so many examples that come to mind of things that we did that felt so gorgeous and victorious because we did them.

And it was because we were living with that sorrow and not pushing it away, not ignoring it once we understood it. We were integrating the two and inviting them to be together. 

Effie Parks: Hmm. [00:20:00] 

I could listen to you all day talk about grief. Jesse, I love the way you explain it. And I think it makes it just so approachable.

And it makes it so real for any person dealing with any type of crisis and loss and grief in their own way. And so I thank you. I thank you for doing the work because I know that it's work to think through this and to really kind of put it in your daily work, right? Which is your podcasting and your blogging and your soon to be best selling memoir.

I'm going to ask you a question that kind of goes along with your podcast. How do you do it, Jessica? How do you make this space and watch grief evolve from having a sick child to losing this beautiful human being to then pushing forward and still contributing to this community and even the larger grief community in such a way?

Jessica Fein: I feel that this brings me closer to the people that I have lost and I have lost a lot of people, right? I've lost my parents and I've lost my sisters and I've lost my [00:21:00] daughter. Being able to share these stories and to share this thinking allows me to be with them in a way. It's not the way I ever would have chosen.

But I look at Dalia, who had so much to be bitter about, so much to be angry about. And she wasn't. She was going to find and spread joy and meaning wherever she could. So I look at that and I'm like, she could do that. Boy, I better be able to do that. And so I feel I'm honoring her.  

Effie Parks: I love that. Grief is such a universal experience, and it can be so isolating, and you know how much I believe in finding your people, right, and telling your story, and being a lifeline, and catching those lifelines when you need it.

So, I really champion anyone who has the willingness and the courage to discuss topics like this.

Jessica Fein: And, you know, grief is such [00:22:00] an interesting one because, as you just said, grief is universal. Like when we think about what are the things that pretty much every single person's going to experience, there aren't that many, but chances are you're going to lose somebody you love at some point.

All of us are going to experience grief, and there's so many different kinds of grief. And so, you know, maybe it's you're losing somebody you love. Maybe it's you're losing some other thing that you are grieving. But regardless, we're all going to experience grief. And yet, we are so weird about it. We're so awkward.

We're so uncomfortable. We don't know how to act. We don't know what to say. I think we need to address that. We need to, as a society, get more comfortable with this. We need to talk about it. And we need to, if we can, share, Hey, you know, maybe you don't want to say, Oh, I can't imagine. You know, because everybody wants to say the right thing.

Everybody wants to help or at the very least not offend. So, let's make it easier for people.

Effie Parks: Amen. And I think too, like, [00:23:00] it's those fresh years for people that those kinds of quips that are not ill intended really sting, right? They can really hurt you and keep you up and make you lose sleep and make you lose relationships and ultimately make you angry if you're not careful.

I think. After you've gotten a little numb to the uncomfortability of other people, you can start to let that go in one ear and out the other, but that's also not the best because you actively have to numb out and make everything okay for everyone else. 

Jessica Fein: Oh, so much of it is about comforting other people.

I found that always in grief, from my first experience with grief, how much of it is making the other person feel comfortable. And how backwards is that? I think where we can figure some of this stuff out, and I mean, even at the beginning of our conversation, you spoke about me as the mother of three kids.

And that's. always who I will be. But let's take something just for the sake of conversation. Suppose you have one child and the child dies, [00:24:00] okay? Now you're out somewhere and somebody says, oh, do you have any kids? And, oh, are you a mother? You know, these kinds of things. It's so complicated and people don't know how to answer the question and people are ashamed when they've asked the question and we don't know how to talk about this kind of thing.

And it makes us question our identity. If I am not the mother of this person that has defined who I am all this time, then who am I? 

Effie Parks: You know, it reminds me of a conversation that I just had with a mutual friend of ours, Jennifer Seidman, and she speaks on something she dubs the supermarket answer. And how she's tried to make it go both ways to educate those people in her life where she's out and someone's like, Oh, hey, how you doing?

Or hey, how many kids do you have? You know, all those things, but that she's also taught her friends about the supermarket answer and the right headspace of being able to answer those questions. And she says now sometimes the ones who are really in it and who really listen and who really try to learn about grief will sometimes also approach her and say, Hey, how's [00:25:00] everything going?

And by the way, I'm not in a good space today. So can you just give me that supermarket answer? You know, and I just think it's so brilliant because it speaks on this. We need to talk about grief more in all these ways and really educate each other on it. And that's okay, too, right? That the person who loves you and wants to support you is like, Hey, I know it's really bad for you right now, but I can't hold it today, but I respect that I understand that you're going to probably have that response.

And I just love how there's this really genuine honesty that can happen if we just have these conversations about it. 

Jessica Fein: I totally agree and I love when she talks about the supermarket conversation and one of the things that's important is being able to give yourself permission to give the supermarket answer.

I was out the other day and I ran into somebody I hadn't seen in a while and she said to me, How you doing? Everything good? Family good? Just like that. And I was like, No! No! Everything is not good. My family is not good. I mean, this is the dialogue going on in my head. And what a dumb way to ask a question, right?

[00:26:00] Because you don't really want to hear my answer and I had all this stuff going on in my head and instead I just smiled and said, Yeah, everything's fine. You know? And that's okay. Sometimes we just want to give that kind of answer and that's fine too. It's up to us. We get to decide. 

Effie Parks: A hundred percent. A hundred percent.

And I think it's also just about that inner awareness and that really strong sense of self for you to be able to check in and just let it pass you by and get on with your day because ain't nobody got time for that sometimes. Well, let's talk about your podcasting and your memoir. As you reflect on this past year of your amazing show that has brought so much goodness into the world and you're preparing for the release of a memoir that is so breathtaking, what are some of the most significant lessons that you've absorbed over the last year of the podcast and even since we lost Dalia?

Jessica Fein: Well, the podcast has been so enriching in so many ways, right? So first of all, just in terms of the most basic, technically, I've learned so much, so much that I didn't know I [00:27:00] would enjoy, like audio editing, for example, right? And putting the show actually together, because in case anybody who's listening doesn't know, I do the whole thing by myself.

That's been super fun. I've actually really, really enjoyed learning these wildly different skills. I have loved meeting the people I've met. I mean, to me, that's the biggest takeaway. I have met such amazing people and gotten to know people like you, who I already knew in an even deeper way. I love the authenticity of being able to have these heart to heart conversations and devoting time to it, right?

It's not just like passing somebody. It's not that how you're doing everything good. We're really getting into stuff and asking some tough questions. And I love that. I think, you know, the thing is I'm such a curious person and I suck at small talk. I cannot do the small talk, but I always have a million deeper questions.

And so this gives me a forum where that kind of thing is okay. So I've loved doing the podcast. And what I've [00:28:00] learned is that there are a lot of badasses out there. I mean, I talked to these people and I am blown away. I don't think I've had a guest who hasn't blown me away in terms of their story and what they are doing or have done.

And it's just been a blast.

Effie Parks: Oh my gosh. Yes. I agree with everything you said, especially as a fellow podcaster. And the way that it just breaks open the world to you and not only lets you understand that you have this interest in all of these skills that you maybe never had thought about, but yeah, the people that trickle in that you never would have met otherwise, like pretty much no matter what, and also meeting these people who are freely sharing their stories, right?

Because it's impacted someone somewhere at some point. And it's just enriching the waters and bringing these stories to the surface. And I love that medium of podcasting.

Jessica Fein: Well, I have to tell you, the other thing is, when I hear about somebody whose story intrigues me, it's given me an excuse to reach out to them.

I had two guests on my [00:29:00] show recently, within the past few weeks. One, Allison Norlian, who's a filmmaker. I read about a film that she had just completed, and I was so intrigued, and I called her, and now I consider her a friend, and I got to have these amazing conversations with her. And then Lisa Fliegel, who is a trauma therapist, who spent the last month in Israel working with victims of the Hamas massacre.

I read about her in the newspaper and I called her. So this podcast has given me an opportunity to reach out to people who are just so fascinating and to get to know them. 

Effie Parks: Yes, I love that. It makes you so brave too, right? You realize that everyone is just a human being and that this hierarchy that you think that maybe you don't qualify to talk to them or to reach them or anything like that just kind of goes away because you have this sort of sense that all you have to do is ask and the worst anyone could say is no.

Jessica Fein: Totally. I am such a believer in that. And I, you know, made some pretty unrealistic [00:30:00] asks, shall we say, and that's fine. But I feel like, look, a long shot is still a shot. The only way that it is absolute impossibility is if you don't ask, right? But so what? So you ask, nobody cares. Nobody, I mean, you put yourself out there, you ask.

Now, I wouldn't personally spend three days crafting an ask that's a long shot. If it's a long shot, I kind of just, you know, put it out there and see what happens, right? The worst that happens is they say, How dare you ask me, but nobody's going to say that. Really, what's going to happen is they're not going to reply to your email.


Effie Parks: Yeah, I mean, if Brene Brown comes back to me and is like, How dare you ask me that? I'd count that as a win. 

Jessica Fein: Yes! Brene Brown emailed me! 

Effie Parks: So funny. Okay, well let's talk about Breathtaking. I thought it was set to be released in January, but you said May. Could you share, like, a little glimpse into what us readers can expect from your memoir?

Jessica Fein: So yes, it is May 7th, which, for anybody who's wondering, is the Tuesday before Mother's Day. [00:31:00] So if, as it happens, you are a mother, know a mother, have a mother I think this is the perfect, perfect Mother's Day gift. And so it's available for pre order now and this is my little sell because what I've learned and I had no idea is that pre orders are super important.

They actually make a big difference in terms of a bookstore's interest. So in any event, that's my little publicity spiel. So the book is called Breath Taking. I came up with the title because it has so many different meanings. First of all, Dalia was the most breathtaking human being, so let's just put that out there.

But Dalia’s disease literally took her breath from her, number one. Number two, so much. Of this life we live as the parents of medically complex kiddos is about not focusing so much on the future. It's about being in the present. You've heard me say, if you know there's not a light at the end of the tunnel, you better make that tunnel as beautiful as you can.

And to me, that's the idea of being in the moment, which was a real transformation for me that I [00:32:00] write about quite a bit in the book. And it's stopping and taking a breath and taking in the moment and making something of the moment. So that's the second part of it. And connected to that is this idea of finding beauty and creating beauty.

That's another theme in the book. So all of these different ways we can interpret this idea of breathtaking are big themes in the book. The subtitle is “A Memoir of Family Dreams and Broken Genes”. The book is really about the journey of parenting and of loving and losing and learning that our hearts can be broken and overflowing at the same time.

Effie Parks: I love that so much. And again, something that you so eloquently speak on on a regular basis. And I think that so many families in the rare disease community are going to identify with this, even if they don't have a child that they know has a limited lifespan and in whatever way. I think that just the idea of the way we have to practice living our life so differently than we expected is going to weave [00:33:00] into so many of the themes that you put into this book.

Jessica Fein: It's not only rare disease parents. I think it's everybody, right? Anybody who wants to understand because we don't have control. You might think you have control. You are delusional though because we don't. I mean, that's the bottom line. So how are we going to live in that uncertainty? Something that I think is important for anybody.

Effie Parks: Yeah, I'm not just saying this is only going to be good for rare disease families, are you kidding me? It's such a universal theme all around. I think that it's just going to be really impactful. And we're so lucky that we're going to get to read it, because I know that it's just going to go into so much more depth in storytelling than I feel like a lot of grief books have done.

I think it's going to make us think. 

Jessica Fein: I hope so. And you know, what's interesting is this book was finished before Dalia died, and it ended in a really joyous place. There is an epilogue now, but it was really never intended to be a book about my daughter's death. And it isn't. It's a book about her life.

Effie Parks: I'd love for you to [00:34:00] talk a little bit about the dahlias in your garden.

Jessica Fein: I'd love to. So I will just say that a lot of the time we do not know what to do. We want to do something for somebody when they're suffering loss or hardship and we don't know what to do. And I think the most glorious thing anybody did for us is the story of our dahlia garden.

It was a colleague of my husband's. This guy's name is Max. And he came over one of the nights we were sitting shiva, which for if you don't know, it's the week of mourning for Jews after somebody dies. And he was just kind of walking around outside the house. We didn't really think much of it. Our minds were elsewhere to say the least.

A couple of months later, he showed up at our house with a truck filled with planting stuff. And he planted a gorgeous dahlia garden for us outside of our home right in front of our house, which has become my husband's project. And he has made it expand and grow and I guess, pun intended, blossom into this most miraculous dahlia Garden. And so we always get to see these [00:35:00] beautiful dahlias in season. We have them all over the house. I didn't know much about the dahlia flower. I just loved the name, but I've learned a little bit. Each kind of dahlia looks so wildly different from the next. I mean, they're so unique and gorgeous and colorful and they bring us a lot of joy.

And so I just love what this guy did for us so quietly and so graciously and without saying, what can I do? 

Effie Parks: Yes, I love it. And if you're not following Jessica Fein on Instagram, make sure you go and do that, because not only does she share beautiful photos of their life as a beautiful family, but of these dahlias, and every time I see them, it makes me smile, it makes me think of Dalia, it makes me live a little lighter that day.

It's a good reminder for all of us. Kind of like the theme in your book. Looking ahead, what are your plans and your aspirations maybe in the next year or two for, I don't know how you do it, and breathtaking, and how do you envision your continued impact on all of us?

Jessica Fein: Well, I have a couple of [00:36:00] ideas for other books, so we'll see what happens there, but I really want to continue Spread what I'm learning, and I love interviewing people, I love speaking, so I'm hoping to move even more in that direction in terms of continuing to connect with incredible people and to talk about these themes, to write about these themes, and I'm looking forward to getting out there with the book and being able to talk to readers.

I'm so excited for that, to travel around a little bit and share it all. I'm very excited and I kept thinking like, oh my God, May of 24 feels so far away, feels so far away, but it's coming. 

Effie Parks: Yeah, it's coming in about five minutes, basically. Okay, well tell everybody how they can find you, how they can contact you, and how they can do the pre order.

Jessica Fein: Okay, well, pre order, Breath Taking, Jessica Fein, F E I N, Amazon, Barnes & Noble, Bookshop. org, wherever you like to get your books. And there's so much you can do, by the way, if you go to your local bookstore and ask them to order it, that's [00:37:00] such a huge, huge help, or go to your library and ask them to order it.

I actually am putting together a launch team. If that's at all interesting to anybody who's listening, please be in touch with me. You can contact me through my website, Jessicafeinstories.com. You can follow me on Instagram, but we're going to have a lot of fun as a launch team. So definitely if that's something that anybody who's listening wants to be part of, I'd love to have you.

Effie Parks: Yes. It's so easy to even just share content. So if that's all you can do, know that sharing people's content and getting it out there and getting the word out there about this book is so valuable. Jessica, thank you so much for being you and for putting all of this beauty out into the world and for letting me come on your podcast and interview you.

I know your audience appreciates you so, so much. There's just palpable energy that comes through of your sparkling soul, and I'm honored to be one of the people who get to share that.

Jessica Fein: Effie, thank you so much. Like I said, it was, if I'm going to tell my story, I'm going to do it with Effie. So thank you, thank you, thank you.

Effie Parks: My [00:38:00] pleasure. Bye, girl. 

Jessica Fein: Thanks so much for listening. I'm going to be taking the next two weeks off. I'll be back with a new episode on January 16th. So if you've missed any episodes up until this point, check them out over the next couple of weeks. If you want to hear Effie's episode, that was episode number one.

And as I look to plan out my schedule for next year, if you know of anybody who you think would make a terrific guest, please reach out to me. I get some of the most interesting guests from listener recommendations. Thanks again for being part of this community, I hope you have a fabulous new year, and I'll be back with you on January 16th.

Music: I've got the whole world at my fingertips. I feel like flying, I feel infinite. I know that we're the kind that think along, some other lines but we'll be fine.

Come along now. [00:39:00] The sky is endless now, we are limitless, we are limitless now, come along now, the sky is endless now, we are limitless, we are limitless now, the sky is calling, calling out to me, some new beginnings with endless possibilities, are you With me. Can you hear me? What I

Come along now. The sky is endless. Are you with me now? Can you hear me now? When I'm singing out When I'm singing out I've got the whole world at my fingertips I feel like flying, I feel infinite I know that we're the kind to think along Some other lines, but we'll be fine

Come along now. The sky is endless. Now we're limit. We're limitless now. Now the sky endless. Now we're we.[00:41:00] 

We are limitless. We are limitless now. Come along now. The sky is endless now. We are limitless. We are limitless now.