Zibby chats with author Jessica Fein about her astonishing, heartrending, vulnerable new book, BREATH TAKING: A Memoir of Family, Dreams, and Broken Genes. Jessica describes her lengthy infertility journey, her and her husband’s unconventional journey to parenthood through international adoption, their three children from Guatemala, and their middle daughter Dalia’s diagnosis with an ultra-rare degenerative disease. She shares what it was like to turn her house into an ICU and care for Dalia 24/7 until she passed away at the age of 17—and how it impacted her marriage and other children. Ultimately, she reflects on the role of writing as a therapeutic outlet.

Transcript:

Zibby: Welcome Jessica. Thank you so much for coming on Mom's Don't Have Time To Read Books and also for, by the way, already having me on your show as well. Breathtaking, a memoir of family dreams and broken genes by Jessica Fine. 

Jessica: Thanks for having me here. 

Zibby: Literally, your book, I was like, no, no, that's not gonna happen.

Oh, no, that couldn't possibly happen too. No, no, no, no. And then at one point, I literally said out loud, are you kidding me? All the things that have happened in your life, it's unreal, the, all the loss, all the stuff. I mean, it's, I don't even know, anyway, my heart goes out to you is all I'm trying to say here.

Jessica: Thank you. Thank you. And I have to say the, are you kidding me? I feel like I have like, turned to the skies and, you know, just shouted into the air so many times in my life as well. Are you kidding me? Because, you know, it just, it does seem unimaginable, even to me as it's happening. 

Zibby: Oh my gosh. Well, if nothing else, what comes across, I mean, so much comes across, but the thing that is most apparent is the resilience that you have and the generosity of spirit, your endless love for those who care about, it just like pours off the page.

Like there's nothing you wouldn't do for somebody you care about, particularly your children, as we saw in the book, but man, you're just, I mean, it's, it's really quite. Astounding, your capacity for, you know, getting back up again and all of it. It's great. Thank you. Thank you. Maybe we should back up. Could you please tell listeners what your book is about?

Jessica: Yes, people are like, what are you, what are you even talking about? 

Zibby: What are you talking about? Sorry. Stop. 

Jessica: So the book is the story of how my husband and I built a family, which was not exactly how we had originally imagined, which we thought would be the more conventional way. But we went through a lengthy infertility journey and ultimately made the decision and completely enraptured with the idea of international adoption and adopted three children from Guatemala.

And when our middle daughter, Dahlia, was five, she was diagnosed with an ultra rare degenerative disease. Later, she got a secondary diagnosis and she was one of six in the world with this double diagnosis. And so what happens in the story is we go from thinking like the tough part's over, we've got our three babies, now we're going to go on to all the stuff we had always dreamed of, to having our entire world turned upside down as Dahlia grew and learned and lost simultaneously because a degenerative disease for, you know, Anybody who's been through it or knows anybody is a particular kind of cruelty, particularly in children, too.

And when Dahlia was nine, she became very sick, and she lost her ability to walk, talk, eat, breathe without a ventilator. And from 9 to 17, that was our reality. Dahlia was what was called an eyes on patient, meaning myself or my husband, or a nurse trained specifically in Dahlia's care, needed to have our eyes on her 24 7.

Like, like, you can't go to the bathroom kind of thing without bringing Dahlia. And, I will jump to the end, which is not any kind of, you know, morbid spoiler alert, Dahlia passed away at 17, two years ago. From 9 to 17, we lived in this Crazy reality of our house was like an ICU and I tried to control the situation as we as moms do to fix the situation when Dahlia was diagnosed, I believed I would personally cure this disease that like brilliant people who actually know what mitochondria are.

Can't cure and how I transformed into, we're not going to solve this. Like this is not going to end with a miraculous cure. So, so how do we live in that context and how do we create a life of meaning and joy? Because I had three kids and I just wanted to be a kid. How do you do that? How do you live a life of again, meaning and joy in that context?

Ours was of course extreme, but I think it's something that, you know, all of us, we're living in uncertainty, we're living in situations that are out of our control, and yet we want to have a life that's gonna mean something and be happy for our kids. 

Zibby: I mean, how could it only have been two years ago, right?

I mean, it feels like you have such a, like a lens of looking back and making peace and that there would be more distance because it's all seemed so processed, but maybe it's because you had so much time along the way to process because you knew it was coming. What do you think? 

Jessica: I think, I think that's an excellent question.

Both of those things are true. So in the first place, I was writing this book, much of it by Dahlia's bedside as Dahlia became sicker. She needed a lot of rest and mitochondria is a mitochondrial disease, the energy deficiency disease. So, for example, you know, if she was napping on the weekends from two to six, I was at her bedside.

Mind you, my husband and I were still working full time during this whole thing, but there was a lot of writing that took place at her bedside. And in fact, this book was done. and was out on submission with a totally different ending. It was before Dahlia died. So I had always envisioned this book ending at this very joyous scene where we figured out how to give Dahlia a bat mitzvah.

And in fact, again, I had been agented and in fact, you know, was well along the process. And then I wrote the epilogue. 

Zibby: And it wasn't even just Dahlia. And also you included scenes like how do you get from vacation in Florida to Get an intubated patient back and what are the logistics of this? And just the nuts and bolts of like, who is watching my other kids?

And how do I get through this weekend? Like, who can I call to help me? Is there anybody? You know, why is the insurance company saying no? And just that desperation and frustration of giant companies being in control of our individual pain. 

Jessica: Yeah, and what you're alluding to, you know, when we talked at the beginning about so much loss is that the book starts with the unexpected death of my sister, who died when she was 30, and I was 27.

And this was my best friend, and it was a sudden death. And along the way, I end up losing a A lot of other first degree family members as well. And so first of all, at face value, this sounds like the most depressing book in the history of the world. And that's not what I'm hearing early readers are taking away.

And I really don't want them to, because. What I want is this idea that there can be light and laughter and joy and hope and not in a Pollyanna way, like obviously this is the worst, worst, worst thing. But again, it's creating a life in that context. And yes, so much of it was like this idea that unnamed huge insurance companies were determining our fate and we're trying to, you know, figure out how to suction somebody who can no longer swallow while also getting two kids to their baseball games while also, you know, going to work in the morning and Figuring out how to get nursing into the house and, and, and, right?

And so it's a lot going on. 

Zibby: You referenced your kids at a couple different points. One kid wandered away during the fireworks and you had a brief note in the epilogue and it sounds like maybe one of your kids is trans at this point, perhaps? Yeah. So, Tell me how the kids are doing, how they felt about your writing the book and what it's like.

I mean, it's, it's not like you brought home a sick child for a weekend, right? This is most of their lives. Their sibling has been very, very ill and now has been lost, which is so sad and I'm so sorry. So what has gone on with them? 

Jessica: Yeah, you know, it's interesting because when I look back on it and I think, you know, with some distance, is there anything I would do differently?

Mm hmm. And. I feel, one thing I do feel peace about is that we did the best by Dahlia. I, I truly believe that and I'm so glad I believe that because that would be a whole other thing if, you know. Yeah. But there is one thing I would do differently and that has to do with the siblings. And for so long, my husband and I, without even really like talking about it or planning it, put on this strong front for the kids.

Mm hmm. Wee! Felt like, you know, we're gonna have family dinner every night and we're gonna go to the fireworks and do the things and yes, Dahlia's getting sicker and yes, there's like a nurse and Uh, personal care attendant with us and, you know, a van of machinery, but, you know, we're okay. We just felt like that was the best thing to do for our other kids.

And one night, our eldest, who must have at that point been, I don't know, 15 maybe, came into the room and broke down, into my husband and my room and broke down, and essentially said, Something's wrong with me, something's wrong with me. And we were like, God, you know. And what our child said was, I am so angry about what's happening to Dahlia.

I'm so scared. I pray and I pray and I pray and nothing changes. You guys. Seem to be totally fine. What's wrong with me? And I was like, Oh my God, you know, because this whole notion of trying to show them that we were strong, completely backfired. And I tell this story because I feel like I learned so much from it and since have been so much more open and honest when I'm struggling about anything with my kids in an appropriate way, of course, but realizing that we were kind of shutting them out instead of bringing them in.

All of, you know, we were good intentioned, but boy, were, were we wrong. So, you know, the kids are really different in how they reacted and, and what their experience has been. My youngest is two years younger than Dahlia. And so he went from Dahlia very much mothering him, right? Dahlia was like, so caring.

And, You know, I have all the pictures of her giving the bottle to the baby and she just felt like he was hers, you know, like she was the mom and she helped him learn how to write and was holding his hand and, you know, all of the things that a maternal big sister would do. And also it was so cute because when we brought him home from Guatemala, he was a huge kid.

They were the same size, so I used to take them out in a double stroller and everybody thought they were twins. But. Ultimately for him, what he had to, so he was seven when Talia got really sick and then the situation got very reversed. So now he was really helping to take care of her and he's just the biggest love in the world.

And I think he kind of kept a lot of the mischief and silliness and normalcy in our lives because he, Treated her like you do a sister, you know, so he would, you know, whatever it was bonker with the stuffed animal or sprayer with water, like do things that were normal and not like I have a fragile porcelain doll that I can't touch.

Right. So that's him. And then our eldest really helped with the caregiving. And then it was interesting, became an EMT. And I think that for. For in that situation, I actually really relied on Jojo because Dahlia became for the last two years of her life, frozen, meaning she couldn't move, she couldn't blink, she could not move.

And so the physicality of taking care of her was, was really complex. Again, she was attached to a ventilator, so it was really high stakes, and Jojo was super strong. So Jojo would, would help me. Jojo, I mean, both kids were doing pretty intense medical care, which maybe I shouldn't publicly admit, because there's probably something that's like, not so great about that.

But in any event, I would say that both of them are the most accepting, caring people. And I imagine it's because they grew up as Dahlia's siblings. Maybe they'd be that way. Anyway, I don't know, but I mean, they're spectacular humans. And I think so often in these cases, siblings are heroes and grow into just these incredible humans.

Zibby: Wow. You reference different pieces of Judaism throughout the book. The number 18 to the bat mitzvah to the bread, like there are just so many things all throughout. Talk about your relationship with Judaism now and especially in the light of all of the hard things that you've been through. Has it made you question faith in general or any of that?

Jessica: Yeah. And you know, I will say that all four of my immediate family members, my husband and my three kids all converted. 

Zibby: Yes. 

I saw that your husband converted. That's right. I wrote that down. 

Jessica: Yeah. And the three kids, I mean, that was something because since they came from Guatemala, we did an actual traditional in the mix.

People don't know what that is. That's the ritual bath. And that's a whole scary thing in and of itself because you got to dump them and their babies, you know? So I grew up very much being Jewish is, is absolutely 100 percent core to my identity, to who I am. It's the context through which I kind of see things.

However, I did not grow up religious. So, and I think it's weird for a lot of people who maybe aren't Jewish or, you know, haven't experienced this because it seems like, well, how can Judaism be that important to you, but you're not religious? But there's so much, and I don't know how, how you feel on this, on this topic, but for me, it's so much about, um, the people and the culture and the tradition more so than, you know, I go to synagogue every week, which I do not.

So within that context, the belief in God was not something I ever really spent much time thinking about. So I didn't then rally against a God who was bringing all of this. On to me in any kind of meaningful way and I think a few things. First of all, I mean, while we're talking about it, the book when bad things happen to good people was written by Rabbi Harold Kushner, you know, decades ago, it happened that I went to school with Aaron Kushner about whom that book was written.

Aaron Kushner had a rare disease called progeria, which is premature aging. And Harold Kushner wrote this book. About his, his son, which obviously became, you know, one of the best selling books of all time. So, so I had known that family and then my sister dying really changed things for me so dramatically that I never really thought why is this happening to me?

Why would God do this to me? It was more Why is this happening? Why'd this happen to her? Any questioning that I had was about the people in my life who were dying and who were suffering more so than like a, woe is me. I was like, woe is them. Like, this is, this is too much. But the one thing that I do write about is when my eldest sister was diagnosed with lung cancer, she believed, truly believed she was going to beat the odds.

I mean, stage four lung cancer is not very beatable. And she believed she would. And she said to me, no, God would do this to you. Meaning to me at that point, so, you know, I still feel as committed and as connected to the religion and maybe even a tad more because of how much joy it brought Dahlia and primarily that was in the music and the community.

She just loved it and throwing her bat mitzvah was one of the most meaningful things that has I've ever done in my life. And, you know, those are memories that are so intrinsic to. to my life now. 

Zibby: Are you thinking of doing anything with all of your now honed medical skills? Like, I'm waiting for you to like go back to med school and become a surgeon.

I don't know. 

Jessica: You know, it's funny. I actually know several moms who did go to medical school or nursing school when their child got some kind of horrible illness. I'm like so done with that. I have no interest. I mean, I feel like I am kind of an EMT now because I went through the program with my eldest to kind of help along.

So I feel like I am an EMT though I'm not actually certified. No, I have zero interest. I have zero interest in like, this is going to sound awful, but it's like caring for other, I'm like, I did that. You know, no. Done. 

Zibby: And how, not that this is any of my business, but because you wrote a lot about your relationship in the book and all that, how is your marriage?

Jessica: I am like, talk about thanking God. I like, I won't blame God for all the shitty stuff, for all the bad stuff that's happened. Sorry. It's okay. But I'm happy to thank God for the, like, blessing of putting my husband and me together because I do think that is, One of the major ways that, you know, we got through and that I've gotten through, he, he was like, just the most miraculous caregiver and partner and human.

I don't know, Zibi, I saw you talking at one of your events about, you know, Your husband, you know, it was like radiating the kind of joy and connection and I feel blessed to have something that seems like that too and, you know, I just I feel really lucky because we know that the majority. of couples who have a child with a disability, let alone child loss and rare disease, split up more than half.

And I can see why. I mean, I absolutely can see why. I think maybe the rest who don't end up like inextricably linked. And also we were always like, we're too tired to think about going off with anybody else. Like who had the energy? You know, nobody will ever understand our lives now except each other. So we're doing great.

Zibby: Excellent. Excellent. I'm glad for that. And how about words? Like, you use language to cope, to share, to educate, all of it. How do you feel about writing at this point? Like, as a healer, as a friend? What is your relationship like? 

Jessica: I love it and have become more and more connected to writing as, not only for myself as a way to share, to bear witness, to, you know, so many, so many people have questions about, uh, I don't know how to act around this or I don't, you know, I feel like I have this lived experience.

that it's on me to share, but also to write fun, lighter stuff. You know, it's interesting. My father was a writer and he wrote a memoir when my sister died and it came out, you know, decades ago, but he was a very, very gifted writer. And I think that I, Kind of watched that and maybe like a teeny little bit came, came down to me.

But that is really where my, a lot of my focus is now is how can I tell the stories that, you know, I've got a lot of stories to tell. 

Zibby: So that's exciting. Yeah. Really exciting. What was the hardest part to write in the story? 

Jessica: Well, the easiest part to write was the epilogue. And, which is kind of weird, but I wrote that in one sitting.

It just poured out of me. 

Zibby: Wow. 

Jessica: I think probably the hardest part were some of those really, really thorny things that happened in the hospital because, of course, I had to bring myself back to the trauma. On the other hand, I could walk away. So when I was in the hospital, for example, Dahlia was in the PICU for in the pediatric intensive care unit for three months.

And so were we there for and there was no leaving. There was no break. There was no nothing and writing about it was really, really hard because I had to go back to room 646 where so much had happened. But on the other hand, I could put down the computer and then go out for a walk or, you know, go have a coffee.

And so I could leave. So I think it was, it was the hardest probably, but at least I was able to get away from it a little bit. And I think maybe that helped in the healing because I was able to revisit it, but then also again, you know, walk away to a more quote unquote, normal situation. 

Zibby: Wow. What advice would you have for aspiring authors?

Jessica: Oh, I have a lot of advice for aspiring authors. So first of all, I think everybody should believe that they have a story worth telling, that their writing is worthy. I meet so many people who are like, well, who would want to read anything I wrote? And it's like, Don't don't think that way. Like your story is worth being written.

Your story is worth being heard. So that's number one. Number two, try and get in a habit, right? And so it's whatever the habit is. It's not necessarily, I'm not like you got to do your morning pages, but I think that If you can have some kind of, even if it's every Tuesday from six to seven and hold yourself accountable, break it up into bite sized pieces.

I always do that. Even if it's an essay, I'll be like, I know this essay is going to need to be a thousand words. I'm going to sit and do 500 words, you know? And then I think connecting with other authors is so important and great. And again, you know, I've met a lot of people who are now really, Special people in my life, other writers, at events that you've put on, and um, I'm really grateful for that.

In fact, I have for this book, an event coming up in Boston, and there's a panel of us, there's three of us who have written books, and a moderator, all of, the four of us, met at your book for your memoir. I mean, excuse me, at your event for your memoir. Awww. Yeah. And we now cheer each other on, you know, so I think having other people in your life who get it, if you're an aspiring author, is so important and so fun.

Zibby: That's great. Well, that, that's so wonderful. I'm really excited to hear that. When is the event? I'll try to count. 

Jessica: Oh, yes, you should. Jean Steele, who interviewed you, is our moderator. So that event is on Newbury Street on the 9th. 9th of May. 

Zibby: I wish. Well, congratulations. 

Jessica: Thank you. But yeah, I think, um, aspiring authors, just sit down and start writing.

Zibby: Sounds easy. And yet. Not always so much. Well, Jessica, thank you so much. Thanks for all of your support. Thanks for sharing yourself so openly on the page and reminding all the readers that, uh, You and we can get through anything. 

Jessica: Thank you so much for having me. 

Zibby: Bye. Thank you so much. 

Jessica: Bye. 

Zibby: Bye.