A Zibby Summer Reads pick! Jessica Fein, BREATH TAKING: A Memoir of Family, Dreams, and Broken Genes
[0:02]Hi, I'm Zippy Owens, and I am the host of this podcast, Moms Don't Have Time to Read Books.
[0:08]I am also a newly minted USA Today best-selling author of the novel, Blake.
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[0:31]Jessica Fine is the author of breath-taking, a memoir of family dreams and broken genes with a G.
[0:38]She's also an essayist, advocate, speaker, and host of the, I don't know how you do it
[0:42]podcast, which features people whose lives seem unimaginable and you triumph over seemingly
[0:46]impossible challenges. I was actually a guest on her podcast. Jessica is a working mother
[0:51]and a relentless warrior in the memory of her dynamic daughter whom she lost to the ultra rare
[0:56]disease, M.E.R.R.F. Murf syndrome in 2022. Her work encompasses hope and humor, grit and grace,
[1:03]the tools that make up her personal survival kit. She's the mother of three, who she and her has
[1:08]been adopted from Guatemala. Welcome, Jessica. Thank you so much for coming on Moms Don't Have Time
[1:13]to Read Books and also for, by the way, already having me on your show as well. Breath-taking,
[1:18]a memoir of family dreams and broken genes by Jessica Fine. Thanks for having me here.
[1:24]Literally, your book, I was like, no, no, that's not going to happen. Oh, no, that couldn't possibly
[1:28]happen too. No, no, no, no. And then at one point, I literally set out loud, are you kidding me?
[1:34]All the things that have happened in your life. It's unreal. All the loss, all the stuff. It's,
[1:40]I don't even know. Anyway, my heart goes out to you. It's all I'm trying to say here.
[1:44]Thank you. Thank you. And I have to say that are you kidding me? I feel like I have like turned to the
[1:50]skies and, you know, just shouted into the air so many times in my life as well. Are you kidding
[1:56]me? Because, you know, it just, it does seem unimaginable. Even to me as it's happening. Oh,
[2:03]my gosh. Well, if nothing else, what comes across, I mean, so much comes across. But the thing that
[2:09]is most apparent is the resilience that you have and the generosity of spirit, your endless love
[2:19]for those who care about. It just like pours off the page. Like, there's nothing you wouldn't do
[2:25]for somebody you care about, particularly your children as we saw in the book. But man, you're just,
[2:31]I mean, it's, it's really quite astounding. Your capacity for, you know, getting back up again and
[2:37]all of it. It's great. Thank you. Thank you. Maybe we should back up. Could you please tell us,
[2:43]what your book is about? Yes, people are like, what are you, what are you talking about?
[2:47]Sorry. So the book is the story of how my husband and I built a family, which was not exactly
[2:56]how we had originally imagined, which we thought would be the more conventional way,
[3:01]but we went through a lengthy infertility journey and ultimately made the decision and became
[3:09]completely enraptured with the idea of international adoption and adopted three children from Guatemala.
[3:16]And when our middle daughter, Dalia was five, she was diagnosed with an ultra rare degenerative
[3:23]disease. Later, she got a secondary diagnosis and she was one of six in the world with this double
[3:28]diagnosis. And so what happens in the story is we go from thinking like the tough parts over,
[3:35]we've got our three babies. Now we're going to go on to all the stuff we had always dreamed of
[3:40]to having our entire world turned upside down as Dalia grew and learned and lost simultaneously
[3:50]because it's a degenerative disease for, you know, anybody who's been through it or knows anybody
[3:55]is a particular kind of cruelty, particularly in children too. And when Dalia was nine, she became very
[4:02]sick. And she lost her ability to walk, talk, eat, breathe without a ventilator. And from 9 to 17,
[4:12]that was our reality. Dalia was what was called an eyes-on patient, meaning myself or my husband,
[4:19]or a nurse trained specifically in Dalia's care, needed to have our eyes on her 24-7. Like,
[4:25]like, you can't go to the bathroom kind of thing without bringing Dalia. And I will jump to the
[4:32]end, which is not any kind of, you know, morbid spoiler or Dalia passed away at 17, two years ago.
[4:39]From 9 to 17, we lived in this crazy reality of our house was like an ICU. And I tried to
[4:50]control the situation as we as moms do to fix the situation. When Dalia was diagnosed,
[4:56]I believed I would personally cure this disease that like brilliant people who actually know what
[5:01]mitochondria are, can't cure. And how I transformed into we're not going to solve this. Like,
[5:10]this is not going to end with a miraculous cure. So how do we live in that context? And how do we
[5:15]create a life of meaning and joy? Because I had three kids and Dalia just wanted to be a kid.
[5:20]How do you do that? How do you live a life of, again, meaning and joy in that context? And
[5:26]ours was, of course, extreme. But I think it's something that, you know, all of us were living in
[5:31]uncertainty. We're living in situations that are out of our control. And yet we want to have
[5:38]life that's going to mean something and be happy for our kids. I mean, how could it only have been
[5:44]two years ago? Right? I mean, it feels like you have such a, like a lens of looking back and making
[5:51]peace and that there would be more distance because it's all seemed so processed. But maybe it's
[5:57]because you had so much time along the way to process because you knew it was coming. What do you
[6:01]think? I think, I think that's an excellent question. Both of those things are true. So in the first
[6:07]place, I was writing this book much of it by Dalia's bedside. As Dalia became sicker, she needed a
[6:14]lot of rest. And mitochondria is an mitochondrial disease, the energy deficiency disease. So for
[6:19]example, you know, if she was napping on the weekends from two to six, I was at her bedside.
[6:24]My husband and I were still working full time during this whole thing. But there was a lot of
[6:29]writing that took place at her bedside. And in fact, this book was done and was out on submission
[6:35]with the totally different ending. It was before Dalia died. So I had always envisioned this book
[6:41]ending at this very joyous scene where we figured out how to get Dalia above Mitzvah. And in fact,
[6:46]again, I had been aged and in fact, you know, was well along the process and then I wrote the
[6:53]epilogue. And it wasn't even just Dalia. And also, you included scenes like, how do you get from
[7:02]vacation in Florida to get an intubated patient back? And what are the logistics of this? And
[7:09]just the nuts and bolts are like, who is watching my other kids? And how do I get through this
[7:14]weekend? Like, who can I call to help me? Is there anybody? You know, why is the insurance company
[7:20]saying no? And just that desperation and frustration of giant companies being in control of our
[7:27]individual pain? Yeah. And what you're alluding to, you know, when we talked at the beginning about
[7:32]so much loss is that the book starts with the unexpected death of my sister who died when she was
[7:39]30 and I was 27. And this was my best friend. And it was a sudden death. And along the way, I end
[7:45]up losing a lot of other first degree family members as well. And so first of all, at face value,
[7:53]this sounds like the most depressing book in the history of the world. And that's not what I'm hearing
[7:59]early readers are taking away. And I really don't want them to because what I want is this idea that
[8:05]there can be light and laughter and joy and hope and not in a polyanna way. Like, obviously,
[8:10]this is the worst, worst, worst thing. But again, it's creating a life in that context. And yes,
[8:16]so much of it was like this idea that unnamed huge insurance companies were determining our fate. And
[8:22]we're trying to figure out how to suction somebody who can no longer swallow while also getting
[8:29]two kids to their baseball games while also, you know, going to work in the morning and figuring
[8:35]out how to get nursing into the house and and hand, right? And so it's a lot going on.
[8:41]You referenced your kids at a couple of different points. One kid wandered away during the fireworks.
[8:46]And you had a brief note in the epilogue. And it sounds like maybe one of your kids is trans at
[8:52]this point perhaps. So tell me how the kids are doing, how they felt about your writing the book.
[8:59]And what it's like, I mean, it's it's not like you brought home a sick child for a weekend, right? This
[9:05]most of their lives, their sibling has been very, very ill and now has been lost, which is so sad.
[9:11]And I'm so sorry. So what has gone on with them? Yeah, you know, it's interesting because when I
[9:18]look back on it and I think, you know, with some distance, is there anything I would do differently?
[9:23]And I feel one thing I do feel peace about is that we did the best by Galia.
[9:30]I truly believe that. And I'm so glad I believe that because that would be a whole other
[9:36]thing if, you know, yeah. But there is one thing I would do differently. And that has to do with
[9:41]the siblings. And her so long, my husband and I, without even really like talking about it or
[9:47]planning it, put on the strong front for the kids. We felt like, you know, we're going to have
[9:54]family dinner every night and we're going to go to the fireworks and do the things. And yes,
[9:58]Dalia's getting sick right now.
[10:00]there's like a nurse and a personal care attendant with us and, you know, a van of machinery.
[10:04]But, you know, we're okay. We just felt like that was the best thing to do for our other kids.
[10:10]And one night, our eldest, who must have at that point been, I don't know, 15 maybe,
[10:16]came into the room and broke down into my husband and my room and broke down. And essentially said,
[10:22]something's wrong with me, something's wrong with me. And we were like, God, you know.
[10:27]And what our child said was, I am so angry about what's happening to Dalia. I'm so scared.
[10:34]I pray and I pray and I pray and nothing changes. You guys seem to be totally fine. What's wrong
[10:41]with me? And I was like, Oh my God, you know, because this whole notion of trying to show them
[10:47]that we were strong, completely backfired. And I tell this story because I feel like I learned so much
[10:54]from it. And since have been so much more open and honest when I'm struggling about anything with
[10:58]my kids in an appropriate way, of course. But realizing that we were kind of shutting them out
[11:04]instead of bringing them in, I'll, you know, we were good intentioned. But boy, we're we wrong.
[11:10]So, you know, the kids are really different in how they reacted and and what their experience has
[11:17]my youngest is two years younger than Dalia. And so he went from Dalia very much mothering him,
[11:24]right? Dalia was like, so caring. And, you know, I've all the pictures of her giving the bottle
[11:30]to the baby. And she just felt like he was hers, you know, like she was the mom. And she helped him
[11:36]learn how to write and was holding his hand and, you know, all of the things that a maternal
[11:42]big sister would do. And also it was so cute because when we brought him home from Guatemala,
[11:46]he was a huge kid. They were the same size. So I used to take them out in double stroller and
[11:50]everybody thought they were twins. But ultimately for him, what he had to, so he was seven when
[11:56]Dalia got really sick. And then the situation got very reversed. So now he was really helping to take
[12:02]care of her. And he's just the biggest love in the world. And I think he kind of kept a lot of the
[12:10]mischief and silliness and normalcy in our lives because he treated her like he do a sister,
[12:16]you know? So he would, you know, whatever was bonkers with the stuffed animal or sprayer with water,
[12:21]like do things that were normal and not like I have a fragile porcelain doll that I can't touch,
[12:28]right? So that's him. And then our eldest really helped with the caregiving. And then it was
[12:34]interesting became an EMT. And I think that for, for in that situation, I actually really relied
[12:41]on Jojo because Dalia became for the last two years of her life frozen, meaning she couldn't move,
[12:48]she couldn't blink, she could not move. And so the physicality of taking care of her was,
[12:55]was really complex. Again, she was attached to a ventilator. So it was really high stakes.
[12:59]And Jojo was super strong. So Jojo would would help me. Jojo, I mean, both kids were doing pretty
[13:05]intense medical care, which maybe I shouldn't publicly admit because there's probably something
[13:09]that's like not so great about that. But in any event, I would say that both of them are
[13:15]the most accepting caring people. And I imagine it's because they grew up as Dalia siblings.
[13:22]Maybe they'd be that way anyway. I don't know. But I mean, they're spectacular humans. And I
[13:28]think so often in these cases, siblings are heroes and grow into just these incredible humans.
[13:37]You reference different pieces of Judaism throughout the book. And the number 18 to the
[13:42]butmets fed to the bridge. Like there are just so many things all throughout. Talk about your
[13:49]relationship with Judaism now. And especially in the light of all of the hard things that you've
[13:54]been through has it? Quest made you question faith in general or any of that. Yeah. And you know,
[14:01]I will say that all four of my media family members, my husband and my three kids, all converted.
[14:08]Yes. I thought that your husband converted. That's right. Yeah. And the three kids, I mean,
[14:12]that was something because since they came from Guatemala, we did a natural traditional
[14:18]in the mix. Interesting. Don't know what that is. That's the ritual bath. And that's a whole
[14:21]scary thing in and of itself. It's not a dump in their babies. You know. So I grew up very much
[14:27]being Jewish is absolutely 100% core to my identity to who I am. It's the context through which I
[14:33]kind of see things. However, I did not grow up religious. So and I think it's weird for a lot of
[14:41]people who maybe aren't Jewish or, you know, have an experience this because it seems so well,
[14:46]Judaism be that important to you, but you're not religious. But there's so much, and I don't know
[14:51]how you feel on this on this topic. But for me, it's so much about the people and the culture and
[14:58]the tradition more so than, you know, I go to synagogue every week, which I do not. So within that
[15:04]context, the belief in God was not something I ever really spent much time thinking about.
[15:11]So I didn't then rally against a God who was bringing all of this onto me in any kind of
[15:19]meaningful way. And I think a few things. First of all, I mean, while we're talking about it, the
[15:25]the book when bad things happen to good people was written by Rabbi Harold Kushner, you know,
[15:30]decades ago. It happened that I went to school with Aaron Kushner about whom that book it was written.
[15:36]Aaron Kushner had a rare disease called Progeria, which is premature aging. And Harold Kushner
[15:41]wrote this book about his son, which obviously became, you know, one of the best selling books of
[15:46]all time. So, so I had no map family. And then my sister dying really changed things for me so
[15:57]dramatically that I never really thought, why is this happening to me? Why would God do this to me?
[16:02]It was more, why is this happening? Why did this happen to her? Any questioning that I had was
[16:08]about the people in my life who were dying and who are suffering more so than like a well-wise me.
[16:14]I was like, well, is that? I'm like, this is this is too much. But the one thing that I do
[16:19]write about is when my eldest sister was diagnosed with lung cancer, she believed truly believed
[16:26]she was going to beat the odds. I mean, stage four lung cancer is not very beatable.
[16:31]And she believed she would and she said to me, no God would do this to you, meaning to me at that
[16:36]point. So, you know, I still feel as committed and as connected to the religion and maybe even
[16:44]a tad more because of how much joy it brought Dahlia. And primarily that was in the music and
[16:52]the community. She just loved it. And throwing her bot mitzvah was one of the most meaningful
[16:58]that has I've ever done in my life. And, you know, those are memories that are so intrinsic to
[17:04]to my life now. Are you thinking of doing anything with all of your now
[17:10]honed medical skills? Like, I'm waiting for you to like go back to med school and
[17:15]because I don't know. You know, it's funny, I actually know several moms who did go to medical
[17:21]school or nursing school when their child got some kind of horrible illness. I'm like, so
[17:26]done with that. I have no interest. I mean, I feel like I am kind of an EMT now because I went
[17:31]through the program with my eldest to kind of help along. So, I feel like I am an EMT, though I'm
[17:37]not actually certified. No, I have zero interest. I have zero interest in like,
[17:43]this is going to sound awful, but it's like caring for other, I'm like, I did that.
[17:48]You know, no, done. And how not that this is any of my business, but because you wrote a lot
[17:55]about your relationship in the book and all of that, how is your marriage? I am like,
[18:01]talk about thanking God. I'm like, I won't blame God for all the shitty stuff,
[18:05]all the bad stuff that's happened. Sorry. Okay. But I'm happy to thank God for the like
[18:12]blessing of putting my husband and me together because I do think that is one of the major ways
[18:19]that we got through and that I've gotten through. He was like just the most miraculous
[18:28]caregiver and partner and human. I don't know, Zibi, I saw you talking at one of your events
[18:36]about your husband. It was like radiating the kind of joy and connection. And I feel blessed to
[18:46]have something that seems like that too. And you know, I just I feel really lucky because we know that
[18:52]the majority of couples who have a child with a disability let alone child loss and rare disease
[19:00]split up more than half. And I can see why. I mean, I absolutely can see why. I think maybe the rest
[19:06]who don't end up like anextricably linked. And also we were always like, we're too tired to think
[19:11]about going off with anybody else. Like who had the energy? You know, nobody will ever understand
[19:16]our lives now except each other. So we're doing great. Excellent. I'm glad for that.
[19:23]And how about words? Like you use language to cope, to share, to educate all of it. How do you feel
[19:33]about writing at this point? Like as a healer, as a friend, what is your relationship like?
[19:41]I love it and have become more and more connected to writing as not only for myself as a way to
[19:50]share, to bear witness, to, you know, so many, so many people have questions about, I don't know how
[19:58]to act around this, right? You know what I mean?
[20:00]I feel like I have this lived experience that it's on me to share, but also to write fun
[20:06]lighter stuff.
[20:07]You know, it's interesting.
[20:08]My father was a writer and he wrote a memoir when my sister died and it came out decades
[20:14]ago, but he was a very, very gifted writer.
[20:18]And I think that I kind of watched that and maybe like a teeny little bit came down to
[20:25]me, but that is really where a lot of my focus is now is how can I tell the stories
[20:32]that, you know, I've got a lot of stories to tell.
[20:35]So that's exciting.
[20:38]Yeah.
[20:39]Really exciting.
[20:40]What was the hardest part to write in the story?
[20:42]Well, the easiest part to write was the epilogue, which is kind of weird, but I wrote
[20:48]that one sitting.
[20:49]It just poured out of me.
[20:51]I think probably the hardest part were some of those really, really thorny things that
[20:59]happened in the hospital because, of course, I had to bring myself back to the trauma.
[21:05]On the other hand, I could walk away.
[21:08]So when I was in the hospital, for example, Dalia was in the pick you in the pediatric
[21:11]intensive care unit for three months and so were we there for and there was no leaving.
[21:17]There was no break.
[21:18]There was no nothing.
[21:20]Writing about it was really, really hard because I had to go back to room 646 where so
[21:24]much had happened.
[21:26]But on the other hand, I could put down the computer and then go out for a walk or, you
[21:29]know, go have a coffee.
[21:31]And so I could leave.
[21:32]So I think it was it was the hardest probably, but at least I was able to get away from
[21:38]it a little bit.
[21:39]And I think maybe that helped in the healing because I was able to revisit it, but then
[21:43]also again, you know, walk away to a more, quote unquote, normal situation.
[21:48]Wow.
[21:49]What advice would you have for aspiring authors?
[21:52]Oh, I have a lot of advice for aspiring authors.
[21:56]So first of all, I think everybody should believe that they have a story worth telling
[22:04]that their writing is worthy.
[22:06]I meet so many people who are like, well, who would want to read anything I wrote and
[22:09]it's like, don't don't think that way.
[22:12]Like your story is worth being written.
[22:15]Your story is worth being hurt.
[22:17]So that's number one.
[22:18]Number two, try and get in a habit, right?
[22:21]And so it's whatever the habit is, it's not necessarily, I'm not like you got to do your
[22:25]morning pages, but I think that if you can have some kind of, even if it's every Tuesday
[22:31]from six to seven and hold yourself accountable, break it up into bite size pieces.
[22:36]I always do that.
[22:37]Even if it's an essay, I'll be like, I know this essay is going to need to be a thousand
[22:40]words.
[22:41]I'm going to sit and do 500 words, you know?
[22:43]And then I think connecting with other authors is so important and great.
[22:48]And again, you know, I've met a lot of people who are now really special people in my
[22:53]life, other writers at events that you've put on.
[22:58]And I'm really grateful for that.
[23:00]In fact, I have for this book an event coming up in Boston and there's a panel of us.
[23:05]There's three of us who have written books and a moderator, all of the four of us met
[23:10]at your book for your memoir.
[23:12]I mean, excuse me, at your event for your memoir.
[23:14]Oh, yeah.
[23:16]And we now cheer each other on, you know, so I think having other people in your life
[23:20]who get it if you're an aspiring author is so important and so fun.
[23:25]That's great.
[23:26]That's so wonderful.
[23:27]I'm really excited to hear that.
[23:30]When is the event?
[23:31]I'll try to count.
[23:32]Oh, yes, you should.
[23:33]Jean Steele, who interviewed you, is our moderator, so that event is on Newbury Street
[23:38]on the 9th, 9th of May.
[23:39]I wish.
[23:41]Congratulations.
[23:41]Thank you.
[23:43]But yeah, I think aspiring authors just sit down and start writing sounds easy.
[23:48]And yet, not always so much.
[23:52]Well, Jessica, thank you so much.
[23:55]Thanks for all of your support.
[23:57]Thanks for sharing yourself so openly on the page and reminding all the readers that you
[24:04]and we can get through anything.
[24:06]Thank you so much for having me.
[24:07]Bye.
[24:08]Thank you so much.
[24:09]Bye.
[24:11]Thanks for listening to moms don't have time to read books.
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