Ep 6 - Balancing Career and Caregiving: A Parent’s Love Story

Episode 6 of The Work-Life Equation

In this powerful episode, author Jessica Fein discusses her new memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes, which chronicles her family's journey caring for their daughter Dalia, who was diagnosed with a rare degenerative disease at age 5.

Jessica opens up about the range of emotions - fear, grief, guilt - that came with being a caregiver while also working full-time and raising her three children. She also shares candid insights about navigating relationships, finding support systems, and the judgment she faced for continuing to work while caring for her daughter. Jessica also talks about her advocacy work and her Psychology Today column "Grace and Grief" which explores our society's attitudes towards loss.

With remarkable vulnerability, she offers hard-won wisdom on balancing work and life, and what friends and employers can do to truly show up during life's most challenging times.

Read the full transcript

00:00:05 – Commercial
Welcome to The Work-Life Equation, hosted by Priya Krishnan and Paul Sullivan. During this episode, you will hear from working parents just like you who understand the daily struggles and triumphs while finding our unique work life equation. Now, here are your hosts.

00:00:25 - Priya Krishnan
Hello everyone, and welcome to the Work Life Equation podcast. I'm Priya Krishnan. I'm the Chief Digital and Transformation Officer.

00:00:32 - Paul Sullivan
And I’m Priya’s co-host Paul Sullivan, founder of The Company of Dads.

00:00:37 - Priya Krishnan
It is our immense pleasure to welcome Jessica Fein to the show today. Jessica is an accomplished author. I am going to wave your book here, Jessica. Her new book which is releasing today, it's called Breath Taking, a Memoir of Family, Dreams, and Broken Genes. It is on the stalls today. Go get your copy. She's also the host of a podcast which is called I don't know how you do it. She's a working mother of three, a seasoned media contributor, having published over 100 articles and columns in major outlets like the Newsweek, the Boston Globe, Huffington Post, psychology today and more. Jessica lost her 17-year-old daughter to a rare disease. Jessica is a passionate advocate and serves on the board of directors for Mito Action. And Jessica is also a friend and a colleague and someone I've had the privilege of working with for two years now. Jessica's been with bright horizons for 25 years. She is a brand custodian for bright horizons and I've had both the privilege and the fortune of getting to know her personally and professionally. I feel. Jessica, our friendship was formed at a time that was a difficult time for both of us. And you've been a friend, a mentor, and an amazing colleague. And I can't wait to break into this conversation with you.

00:02:00 - Jessica Fein
Well, thank you, Priya. I feel the same way and it's really so lovely to be here today in this capacity. So thank you for having me.

00:02:08 - Paul Sullivan
Jessica, we're so grateful and excited that you're talking to us on what we authors call pub day. It's a big day. You've been working years and years and years of this. It comes out today. Both Priya and I, we had advanced copies. We were able to read it. But for the listeners, for people watching the podcast right now, could you talk a bit about how you came to write this book, why you wrote this book, and what the story is about overall?

00:02:34 - Jessica Fein
Absolutely. Absolutely. So the story really is about building, loving and losing family. So it starts with a very long and complicated journey to becoming parents. My husband and I went through many years of fertility treatments and ultimately we adopted three children from Guatemala. When our middle child, our daughter Dalia, was five. She was diagnosed with an ultra rare mitochondrial disease called Merrf syndrome. And what happened was, over the next four years, she started to develop more and more symptoms. It's a degenerative disease, but when she was nine, she became very, very sick. And at that point, she lost her ability to walk, talk, eat, and breathe independently. So from age nine to 17, we cared for Dalia in our home, which became kind of like an ICU. She was an eyes on patient, meaning myself or my husband or a nurse trained specifically in her care, had to have our eyes on her 24/7 my husband and I were both working full time during these years, and we were raising two other children and living life. So why the book? You know, I wanted to bear witness to what was happening. I wanted to share what was both a unique story by definition, but also a really universal one in terms of caregiving and parental devotion and juggling and all the things that so many of us are doing on a day to day basis. So she was my inspiration, and I hope that her beauty and light and love shines through on every page.

00:04:25 - Priya Krishnan
You call the book a love story. The way you open the book is, it is a love story, and your love and the sorrows shines through. In the book, there is a instance where a nurse reaches out to you and questions why you continue working and the effect it would have on your daughter. But she. She doesn't sort of have the same concerns for Bob through the. For Rob, through the conversation, can you tell us how, you know, what that was about and how it made you feel and how you handled it, more importantly?

00:05:00 - Jessica Fein
Yeah. So just to. Just to be clear here, it was really strange because we went from, you know, living a life that everybody can relate to, to having tons of people in our house at all times, right? Because we had nurses and we had personal care attendants, and we had people delivering machinery and checking on machinery, and, you know, it became a real, like, thoroughfare, right? It was not our private little recluse anymore. And so one of the things about that was this feeling that we had no privacy. I felt kind of like I was being observed at all times. You know, things that typically are within the confines of a family. You know, family's privacy. Like, you know, let's have cereal for dinner or, you know, we're going to leave the laundry unfolded on the couch for three weeks, whatever it is, like, there were people all the time. So even at the most superficial level, there was always like, am I being judged? But what happened was I got, actually, an email one evening from one of the nurses who was spending a lot of time in our house, and it was addressed solely to me. And I will say that I was the primary breadwinner in our house, and my husband was, for sure, a better hands on caregiver. And yet the letter was addressed only to me from a woman to a woman questioning why I continued to work, saying that in her decades of nursing experience, she had never seen such a critical patient where a. A family member wasn't present at all times. And if, while I was taking care of my daughter, she said I was thinking about work, then it was, quote, only a matter of time before something catastrophic happened. She said she couldn't live with herself if she didn't share this with me. So I was stunned, right, to get this. First of all, I mean, this whole notion I had that I was secretly being judged wasn't a secret anymore, right? And, of course, I was so taken aback. Why am I getting this alone? Like, why isn't this being sent to rob and me together, you know? And I also started to worry maybe she was right because I was so out of my league. I mean, we were doing very intense medical care, and it was scary. And I did wonder if maybe I wasn't giving my child enough and maybe I wasn't giving my other children enough. So she was definitely hitting me in, you know, areas that, that landed with me in a really uncomfortable way. So, you know, it was funny. I told my sister, and she was like, you know, you got to fire her. Like, that's crazy how out of line. And, you know, friends were all kind of rallying around me, but also, we needed her, right? We. There's a nursing shortage. There is today. There was. Then it was very hard to find reliable, competent in home nurses, especially, who had the kind of skilled care we needed. And I didn't want to lose her, so I kind of simmered with it. I thanked her for giving me her opinion and carried on, but I never forgot it. And that's why it's a scene in the book, because it just, it struck me on so many levels, but particularly the fact that it was me. It was the, it was the mom who was being told, you should not.

00:08:30 - Paul Sullivan
Be working, you know, after you got that note and you said, when you went to your husband Rob, and you told him, you know, what she had said, you know, tell the listener, what was his reaction to that?

00:08:43 - Jessica Fein
He said, oh, yeah. So my husband's a teacher, and one of the things he always says is most of the time, it's not you, it's them. Whatever the thing is, right? In fact, he jokes about writing a book called it's not you, it's them. And other lessons I've learned as a high school teacher. But he said, look, clearly this is about her and her own choices she's made, because in the letter she says, I myself gave up a very high power career to care for my family, and I never regretted it. So clearly she was laying her own stuff on me, and that's how my husband responded.

00:09:27 - Priya Krishnan
When you're facing challenges in life that can be used, it sounds like you had a lot of people around you. But there's also a saying which is, you know, you don't have to be alone to feel lonely. It can be a very isolating experience in general, because it is a experience of one. What kind of role did friends, work colleagues, family play in all of this? Who is your village and how did you cope with this?

00:09:55 - Jessica Fein
Yeah, it's such a good point, Priya, because it is both on the surface. You're not alone anymore. You have no privacy. And yet, as you point out, it was so isolating because people couldn't relate. And even, you know, I've always known from the very beginning when she got her diagnosis that the people close to me were in a no win situation. Because if they were to say to me, oh, you know, my daughter sprained her ankle and she's going to miss the gymnastics meet, or my son has strep throat, like, okay, how can you say that to somebody whose child has an insidious disease? On the other hand, I didn't want people to hide what was going on in their lives from me. Right. So I was very aware of the fact that my friends and family were in a no win situation in that respect. But it is so isolating. Every step along the way and ultimately into the grief journey, it becomes isolating because you no longer feel like you can relate to kind of everyday stuff that people are going through. So I think that what was important for me, and it still really, really is, is connecting with other people who have a similar situation. And that doesn't mean finding other people who have the same. Whose children have the same disease my daughter had. My daughter's dual diagnosis was one of six in the world. I'm not going to find those people. But having people who live with a medically complex situation or having people who live, you know, it doesn't have to be the exact same thing. But when you find other people who are going through, through the same thing. There's such beauty in that, right? And that's why I even think in the workplace, having the ergs where you can find other people who might be relating to you at one of these different kinds of levels, it's so important because those are the people where you can really just let it out. And by the way, I will say, pS, social media is a great thing for this. And for all of the yuckiness that comes with social media, there's a real beauty in being able to connect with people. I had a woman from India reach out to me whose child had one of the mitochondrial diseases that my dahlia had. And we ended up speaking on the phone, and this was through Facebook. She found me. And I thought that was so amazing that you can connect if you put yourself out there, but the key is you got to put yourself out there. And that took a while for me to be comfortable with.

00:12:28 - Paul Sullivan
You know, Jessica, there are a lot of lines in the book that we kind of jotted down some notes here, but when we think of Dolly, you think of, you know, her life up to age five, happy, smiley kid, you know, everybody really beloved her, you know, gets the diagnosis. And then around five, there's a line about, you know, you know, it's going to come at some point, but you say, like, you know, in the meantime, you, you build a life which is, wrote it down, very powerful. And then nine, she gets pneumonia, and that sends her anew into you, the ICU, for a prolonged period of time. But as you said, she was one of six in the world who had this dual diagnosis. But there are lots of families who get diagnoses with their children, say, around leukemia or other more common but also scary diseases. And you have this great line where you talked about this, isn't it? Exactly. But essentially it's the conversion you made to live with fear as opposed to live in fear. And I thought that was a really great distinction and also something that the listeners might be able to take from talk about that moment where you stopped living in fear and you started to live with fear and what that did for you and your family.

00:13:37 - Jessica Fein
Yeah, thanks for asking that. I think that there's something about all of these things that we're feeling, the fear and the anger, the anxiety. There's one thing to have those things kind of control us and dominate, and that's when we live inside of that. Right. But when we realize that these are very real emotions, they're totally justified and they're going to be here living with me. So. Okay, come on in. We're all going to live together. That's okay. But I'm going to be the one who's in control, right? It's not going to be you. Anxiety or you fear. It's going to be me, and I'll invite you along for the ride. Right. So I liked to think about it that way, that, you know, you integrate these different feelings into your day to day, and that's how you can move forward, because otherwise they can just consume you.

00:14:33 - Priya Krishnan
It actually comes through in the book all throughout. You know, it's this range of emotions that you're going through in every single moment, and you encapsulated that beautifully, which is invite them like their friends and, you know, carry them along with you.

00:14:49 - Jessica Fein
What about.

00:14:50 - Priya Krishnan
I don't know. You know, the whole. I feel like it was a shared experience. And that's the beauty of the book, the way you've written it, both with a sense of what. What your journey was like, but how you took it every step of the way along that journey. How did you take care of yourself as you were navigating this? Because it was a long journey. It was one that took time, courage, patience, I think, curiosity to find out what you could do about it. What did you do to take care of yourself? And I think I have a second question, which is, you know, how have you, Rob and the boys dealt with what might feel like survivors? Guilt. And the range of guilt that you felt, how did you deal with that?

00:15:36 - Jessica Fein
Yeah, so, okay, how did I take care of myself? So, first of all, I will say a piece of advice that somebody gave us very early on. And this was a couple, two healthy people who had one healthy child. And we were out with them one night early on in this journey, and they told us that they each gave the other one night off during the week. And Rob and I looked at each other and we were like, that's brilliant. You know, it's so simple. But why didn't we think of that? I realized not everybody has the good fortune to be in something like this with a partner, but maybe there's a, you know, a neighbor, somebody else. For us, we gave each other a night. So Tuesday nights was his night, Thursday night was my night. And knowing all week that I had a night to myself meant so much all week long. And so having that alone time where I could be me, I wasn't mom, I wasn't employee. I wasn't caregiver. I wasn't, you know, any of these things. I would often actually go sit somewhere and write or meet up with a friend or whatever. But so that was. That was a big thing for me with quote unquote, self care. I know some people like that term, and some people, you know, aren't quite as much of a fan of it, but having that time for myself, I also am really fortunate to have a bevy of girlfriends who live all over the place, really, and I wouldn't have had time to see them anyway. But just being able to connect with people on the phone, that was important. And I will say, for me, working was really, really important. It was a chance to get out of the house and to be who I was before and to be who I would be after and to have other elements of my life that were not this intense, terrifying being on the precipice thing. And I also think, by the way, it was a really important thing for my other kids to see and for my daughter to see. Right. That this illness was something we were all living with, but we had life outside of the illness. And so I think that working was important for me as well. And I know there was a second part of the question, Priya, but I don't remember what it was.

00:17:57 - Priya Krishnan
I was asking whether there was survivor's guilt. And, you know, there's so much, so many different kinds of guilt you brought up in the book. And I was like, there must have been something, and I'm sure it's different for all four of you, but, yeah, I'd love to hear about that.

00:18:12 - Jessica Fein
Yeah. You know, I have one thing that I feel guilty about, and I like to talk about it because I feel like it's something that I wish somebody had told me earlier. And maybe somebody listening takes something from this, which is my husband and I put on a strong front for our children. We felt that this was our job. We were the parents. We wanted to be the ones who were kind of dealing with the tough part of it. I mean, I realize how this sounds. It's bonkers and ludicrous and backwards, but it's how we felt. And so we were trying to protect our kids by having this strong, quote unquote strong front. And it really backfired, because what happened was our kids knew what was going on. They were living it, too. And they thought, ultimately, what's wrong with us? You're out there and you're living life and you're okay, and you don't look scared, and this and that and the other thing. And something must be wrong with me because I'm so scared. And one of our eldest actually came to us with this some point along the way. And I thought, oh, my God, we really messed up. I was so grateful. I learned so much from it, but I really wished I could rewind the tape and do it differently, because in trying to, quote, unquote, protect our kids, I think we really did them a disservice. And so for me, you know, I don't know if I feel guilty, but it is something I would do differently if I were in this situation today. I would be honest in a different way, in a way that they could handle it. And I will say their pediatrician, who became a very close friend, used to call us and check in all the time and say, why don't you let me come over and I can unpack things with the kids? That's how he used to say it. And I was like, we're very good keeping things packed. The suitcases are fine just as they are. We don't need to unpack anything. And in retrospect, I realized he saw what was happening. And, you know, so that's something that I wish I could have done differently.

00:20:20 - Paul Sullivan
Jessica, I like to pick up on that and have you talk a bit more about your other two kids because, you know, I'm a father of three, and I know that there are always moments where you go to the child who needs you in that moment and you help out. And if you do it too often, one of the other ones will chime in with, it's not fair, or you always do that, or you never do this. The case with Dahlia was so much different. Like, once you got the diagnosis at five, once you became really sick at nine, it wasn't going to, it was going to go on for years and years and years. So were you able to find time for the boys and to do things individually with them? And I'm just thinking, like, the listeners here could be in a very similar situation, albeit with a different type of childhood disease, and how you were able to sort of still allow them to be kids, do things with them while knowing that you, Rob or a nurse had to have your eyes on Dahlia at all times.

00:21:12 - Jessica Fein
Yeah. So Rob and I did not spend much time together with the other kids, but not right away, but not too long after age nine, when Dalia became quite sick, we did start to have more one on one time with them. I would take them on vacations, or Rob would take them on vacations, or I do one on one nights out with each of them and again, because we had the luxury of being able to rely on each other, Rob and me, we were able to do that and to give them that kind of attention. Having said that, there is no question that all of us revolved around Dalia and that they are who they are today because of that, that they are just the most empathic, sensitive, caring individuals. And maybe they would have turned out that way anyway. We'll never know. But I think that Dalia, being Dalia's siblings, had a lot to do with that.

00:22:12 - Priya Krishnan
Talk to us a little bit about work, and like I said, you've been with bright horizons for 25 years. How were your work colleagues? What was your support structure here? I know you mentioned that both in the book. I've heard you talk about it several times while you're here. Talk about both the supports that you got, but also the ecosystem that you had, because that was a very special part of your life.

00:22:38 - Jessica Fein
I will say that if there was ever a question about, as an employer, you get what you give. There was this cleared that up, because when you support your employees, boy, are they going to support you in return. And I felt that, and my husband felt that we were so fortunate to have supportive employers. So my direct manager changed. I got a new manager in January of 2014. And then in February, that's when my daughter became ill. And I was suddenly living, literally, in the pediatric intensive care unit for many months. And he called me and he assured me that there would be a job waiting for me whenever I was ready to return. And the notion that I was given that kind of comfort in being supported, to care for what really mattered, I was blown away by it. And I spent many, many years afterwards feeling like I just wanted to give so much back because I was so grateful. And I will say we met other people. We saw other people who were in the pediatric intensive care unit, who weren't so lucky, who had to leave their child during the day and go to work. And I understand that it was a real luxury that we were given the opportunity to spend that time. The other thing that my employer did, and really my colleagues did that blew me away was they were given the opportunity. The colleagues were given the opportunity to donate their vacation days to me so that I could take more time with my daughter. And they opened that up. And apparently, all of the days, I guess, there's a limit on how long you could do that for. You know, took like, eight minutes or something. So these kinds of things, you know, that an employer that my employer did for me made me feel so seen and so well cared for. And luckily my husband was in the same situation.

00:24:56 - Paul Sullivan
You're listening to The Work-Life Equation podcast with Priya and Paul. We're talking to Jessica Fein, author of Breath Taking, A Memoir of Family, Dreams, and Broken Genes. We’re going to take a quick break and well be right back.

00:25:22 – Commercial
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00:26:17 - Paul Sullivan
Welcome back to The Work-Life Equation with Priya and Paul. Our guest today is Jessica Fein, and we're talking about her brand new memoir, out today, Breath Taking. Jessica, I want to kind of pick up on that last question that Priya asked you in the first segment. You told a really powerful story about work. Both your colleagues at Bright Horizons who were there to support you, your manager, who's there to support you. You also told a sort of gut wrenching story about a nurse who questioned your desire to work. But I want to take it out of the world of work, take it out of your home and talk about your friend. And, you know, this was surely when it all first happened, your friends would rally around you. But Dalia's illness lasted quite a long time. How were they coming into and out of your life? How are they being supportive? But when you think of, again, not Cassie and judgement, but the ones who were really crucial, what did they do that they did so well? And hopefully maybe some other people who are in a similar situation may hear this in say, okay, that's a good idea. I will do this for my friend who is in need.

00:27:24 - Jessica Fein
Yeah, thank you for asking that. And it's interesting because what you find is that some people show up who you never would have imagined, and they do it in a beautiful way and other people who you might have thought you could count on just become too uncomfortable and disappear. And I think that's the same when you're dealing with an intense, caregiving situation as it is in grief. So the people who really showed up in a meaningful way. First of all, took it upon themselves to learn a little bit about what it meant to have a degenerative disease. Didn't ask us to be, you know, the expert all the time. Everybody has access to Doctor Google, and they could check for themselves and learn for themselves. And that really meant so much. The people who would show up, literally, I mean, we could not go out. We couldn't do it in the way that we used to. So, for example, it wasn't just that we needed a nurse to take care of Dalia if my husband and I went out, but we needed a babysitter, too, because a nurse was not a babysitter. So a nurse couldn't be responsible for the other kids. So now it became a logistical and an expensive proposition for us to go out. But we had, for example, this one couple friends who would just say, we're coming over with dinner, and they would pick up dinner and they'd come to our house and, you know, maybe that wasn't the most fun thing for them, but they knew it was what we could do, and that meant so much to us. Another thing is not saying, like, oh, I know you're, you know, let me know if there's ever anything I can do that doesn't really mean much to the person on the receiving end because we don't know what you're actually offering, and we don't want to have to think about what it is you might be able to do. So taking that initiative to say, hey, you know, I was thinking I could take your other kids out to the movies and ice cream, or I would like, I was just saying, we're going to bring over dinner or, you know, coming up with some ideas. I'm going to come over Saturday and just, you know, if it's okay with you, we can just spend time and, you know, hang out together at your home. So taking that initiative and being present and showing up, either physically or if you're long distance, calling and checking in. And the thing is, I'm laughing because I actually made a t shirt about this. I was speaking on a panel once, and this question was asked, and what we talked about was, we want to continue to be invited. We might not say yes, but don't stop inviting us. Right? And so we ended up making a t shirt that said, ask me to go kayaking, because that's the specific example that came up. The idea is you might ask me ten times and I might say no every time. Please don't stop asking. It means something to be included and asked, even if I can't, even if I can't join.

00:30:19 - Priya Krishnan
You've written a lot of articles across various publications, but you have a regular blog in psychology today which is called grace and grief. What do you feel is wrong with society today in general? We are not taught how to cope with grief. We're not taught, you know, here is how you both provide support or ask for support. So talk to us a little bit about what are your messages through that blog and what you continue to pay forward, because it is certainly something that you talk about saying, you know, just the point that you made right now. Don't stop asking. Continue to include us. So what about grief? Would you say? You continue to pay forward and what do you talk about in the column?

00:31:05 - Jessica Fein
Yeah. And, you know, it's so interesting to me because grief is probably the most universal emotion there is. Right. Like, it's a pretty sure bet that at some point each of us is going to grieve. Right. And yet as a society, we're so weird about it and we're so uncomfortable about it and we don't know what to say and we don't know what to do. And in the meantime, we, we're all going to go through it. Right. So that's one of the messages. I'm just trying to bring some of these things to the forefront, some things that maybe people don't like to talk about so much. And there are so many misconceptions. For example, the five stages of grief, that's not a thing. First of all, that was never intended to be for the death of a person. That was intended to be when you were diagnosed with a terminal illness. And it's outdated and it's not a sequential thing. And there are many more than five phases you're going to go through, and they're going to be all jumbled up together. Right. So that's one thing. And people think there's a time limit on it. Right. So, you know, well, it's been a year. Shouldn't you be over it by now? I hope I never stop grieving for the people I love. And it's not just my daughter. I've had a lot of loss. I've lost both of my sisters and so forth. And that grief, it lives right with me. Right. Because that's, you know, that's the love showing up. That is the other side of the coin. Right. So that's another thing about grief that I think is really important. And then I think, you know, the workplace can really step up, too, when it comes to grief and bereavement, because, again, it is so universal. And what we were just talking about, when you are supported by your employer, you pay that back tenfold. And it's really a place where some more education could be happening and where we have a long way to go as a society in terms of offering adequate support.

00:33:13 - Paul Sullivan
You know, one of the things you talk about, one of your columns is you give this example of, you go and you come in and get your hair done, and somebody says, you know, how are you doing? And to answer it truthfully would be a long answer. It would be a very painful answer. And our default answer is always when somebody asks, how you doing? Fine. Fine, fine. Or you highlight something that's positive. Or if you hear somebody say, oh, my goodness, I can't believe my daughter got a c in that class, you would say, oh, my goodness. Is that your biggest concern? Your daughter got a c? When you think about the interactions, otherwise, well meaning people are saying the things in their lives that are bothering you, but they know that you have something that is so much bigger. I know you can't script this out, but is there a way to manage that interaction and still be honest? You give a couple of tips in one of your comms about this, but how you actually answer those questions and when you feel that you can answer them honestly, maybe talk a little bit about that.

00:34:17 - Jessica Fein
Yeah. And I would say to both give yourself grace and give the other person grace. Right. Because we've all been in those totally awkward positions where we've said something and then feel like, oh, God, I didn't know, or I didn't know what to say. So we enter it with that kind of understanding. Right. But it can be very, very difficult when people give you an example. I was on a call the other night with a group of people. We hadn't seen each other in some time. It was actually a camp reunion kind of situation. And about 20 people, and they go around at the beginning to say, tell us what you're up to. Well, as soon as the second person went, I thought, oh, no. Because they start talking about their kids, and there's nothing wrong with that, right? I mean, I'm sure that's what the person wanted to, to share, but I'm sitting there for the ten people before me going, what am I going to say? Am I going to bring it up? Am I not going to bring it up? You know what I mean? And then, of course, the other people who are on the call who know are also thinking, oh, God, what's going to happen? And I think that's by definition why we were talking about earlier. It's isolating what should be. Normal small talk conversations just aren't anymore. Right. And so I think that what we, as the person who's grieving or going through hardship, need to really understand is it's okay to share as much or as little as you want, but you are not betraying the person you've lost. If you say, yeah, you know, everything's fine, right? If you don't want to get into it, that's okay. That's your prerogative. And if you do want to get into it, then the person on the other end should really take that as a gift because you're trusting them with what you're going through. And that's not something that you, you know, all of us, can do readily for all people. So I think it's really up to the person to share as much or as little as they want to and not to feel guilty either way.

00:36:18 - Priya Krishnan
That is such good advice. It is true. When you're talking to someone, you don't give yourself grace. You're always afraid about saying the wrong thing and just also giving yourself the permission to say, I'm not ready to talk about it is something we forget. You know, you're just constantly thinking about what is the right thing to do, and you're avoiding those social settings. Tell us about what you've done. You are doing so much as she was around and as she was, as you were dealing with her illness from the age of nine to 17, you went out, you said, let me educate other people on the condition. Let me find out more. You got on the board of Mito action. You also have Dalia's wish. That was something that you put in place. Talk to us about that. Talk to the listeners, because there is so much I want you to talk about, and then I will tell you what I think about it.

00:37:15 - Jessica Fein
No, thank you for asking me because I love to talk about Dalia's wish. And this is really something in partnership with Mito Action, which is the research, education, and advocacy organization for mitochondrial disease. And we have a program called Dalia's Wish where we send families where there's a child who has a diagnosis of mitochondrial disease on the trip of a lifetime to Disney to stay at give kids the world village, which I believe is the single most magical place on earth. We stayed there with Dalia when she had her make a wish trip. And so this is an opportunity for families to be together and to be in a place where what they're going through, nobody's staring at them, nobody's expecting more of them, or, you know, it's just totally accessible. And it's at Disney, right? So, I mean, it's magic by definition. And it's so beautiful because what we're doing is we're not only giving the whole family a chance to be together and to be, quote, unquote, normalized, but we're also helping them build memories. And I cherish mine, and I'm so grateful to have the opportunity to help other families experience that.

00:38:32 - Paul Sullivan
You know, I want to take that, I guess, a moment of kindness. And, you know, I'm a sucker for kindness in this world. And there's a beautiful scene toward the end of your book in which you and Rob go to Canter Hollis because you want to talk about whether or not Dalia could make her bat misfit, whether she could do this. And there's certain things you have to do that she may not be able to do. And I want you to tell this story. But Cantor Hollis is so creative in her response and so kind, and she's able to work within this many thousands of years tradition to do something really meaningful for your family. Can you talk about how Cantor Hollis was able to come up with a solution for you?

00:39:17 - Jessica Fein
Yes. And I love that Cantor Hollis is somebody that kind of stuck with you after reading the book, because she truly is a gem of a human being. So as it came time for Dalia’s bat mitzvah, and of course, again, this is degenerative. So for many of us, we know the date of our child's bar bat mitzvah from, like, the time they're, you know, itty bitty. Right. These things are planned through the synagogue. And as we're getting closer year over year, I was spinning out of control. Can we do this? I mean, Dalia couldn't speak, and chanting the blessings is kind of the central proposition of bar bat mitzvah. And, you know, so many other things. And I didn't know. And at the other, on the other hand, I didn't want to hold this back from her, this rite of passage, this celebration in the community. And I wanted her siblings to see that she just as deserving of this as they were. But I didn't know how. I didn't know what. And, you know, I was pretty good at spinning. So I went to Cantor Hollis, and I, you know, was kind of going, talking a mile a minute, as I'm known to do. And she said, let's focus on what Dalia can do rather than what she can't. And those words, I mean, talk about just cutting right to the chase. Right? And you know what? Don't have to have a rare degenerative disease for that device to be able to take root. We can. Look, you know, I think about that with my other children, with. Even with myself sometimes. Right. And that really helped guide every decision that we made as it came time to have this glorious, magical bat mitzvah that, again, was an opportunity to create these memories that would become so much more important than we, you know, could have ever imagined.

00:41:12 - Priya Krishnan
Well, we could keep going on. We usually close the segment with three questions for our guests. So I'm going to let Paul start.

00:41:21 - Paul Sullivan
Oh, I get started. Okay, I'll start this. Okay. So, you know, Jessica, in your own words, define work life balance.

00:41:31 - Jessica Fein
Work life balance. Okay. Well, first of all, I am neither a fan of the term work life or ballots. And the reason why. And, I mean, I realize I'm saying that in the context of the work life equation, but the term work life, for me, implies that work is not a part of life. That there are these two opposing things. You've got your work and you've got your life. And I hope that for a lot of us, work is a part of life. Right? And so that idea of work life. And then, of course, balance, implying that when one is up, the other's down. Right. But it was not mine to critique the question, rather to say, what does it mean to me? And I think that for me, it's feeling fulfilled in both aspects of your life. Feeling fulfilled at work and feeling fulfilled at home and not having either suffer at the expense of the other.

00:42:22 - Priya Krishnan
Okay. Besides, the one day in the week that you and Rob have negotiated, respectively, maybe it's on that day. What are your go to activities to unwind when you're not balancing work or alive?

00:42:37 - Jessica Fein
100%, it is curling up with a great book. That's my happy place.

00:42:44 - Paul Sullivan
And last question, Jessica. You know, what advice would you give to other mothers, fathers, caregivers out there who, you know, have a child with a childhood disease, you know, rare or not, what advice would you give to the1m to help them make it through?

00:43:03 - Jessica Fein
So I think a couple things. Number one, as you're comfortable with it, if you can share what you're going through, the returns are really great on that. And I think that it can be even more isolating when we keep it all to ourselves and think, well, you know, I don't want to talk about my personal situation at work. And I think even as you become a leader, when you can express that vulnerability, when you can tell and share about what's going on with you, I think it makes people trust you more. And I think it just makes for deeper, more fulfilling relationships at the workplace. The other thing I would say is check in with yourself every so often and maybe you even need to put it in your calendar. Maybe it's every six months or whatever it is, but check in with yourself. How's it going for me on the work front, on the home front? What's working? What's not? What do I want to adjust? And it might sound so silly to have to be deliberate about checking in, but I think that time will just go on, right? And you're just kind of moving forward and going, going. And so I think pausing formally to give yourself that time to figure out what's working and where you want to adjust can be really meaningful. And if you do that with your partner, with a best friend, a sibling, a mentor, whoever, I think talking those things through and figuring out how you want to make changes over the next period of time is an interesting strategy.

00:44:39 - Paul Sullivan
Jessica, thank you so much for joining us today on the Work Life Equation podcast with Priya and Paul. And for our listeners, remember, breathtaking. Available everywhere. So please go check it out. And thanks again.

00:44:52 - Priya Krishnan
Jessica, don't go check it out. Go buy it. Thank you. Thank you, Jessica.

00:44:57 - Jessica Fein
Thank you so much.

00:44:59 – Commercial
What's more magical than a childhood filled with days of play, learning, exploration and discovery? At Bright Horizons, we think of childcare as a chance to help a child experience it all. Our teachers go beyond the usual ensuring your child has an enriching, satisfying day. They take the time to listen, engage, encourage, and celebrate the wins, big and small. At Bright Horizons, we put the care in childcare. Visit brighthorizons.com to find a center near you. Thanks for tuning in to this episode of The Work-Life Equation. For more parenting resources, visit brighthorizons.com and be sure to follow us on social media.

Priya Krishnan, Senior Vice President, Client Relations and Growth Operations
About the Author
Chief Digital and Transformation Officer
Priya Krishnan comes to Bright Horizons after founding and running India's largest childcare business. She is the winner of many awards for her work in the space, including Woman Entrepreneur of the Year, Young Turk, FT1000 for Asia, and Red Herring Asia.
Episode 6 of The Work-Life Equation