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192. Motherhood, Advocacy, and Navigating Ambiguous Grief
49 Plays19 days ago
Jessica Fein hosts the"I Don't Know How You Do It" podcast, featuring conversations with people whose lives seem unimaginable and who often hearthat very thing. Her writing, which explores grief, resilience, and the unbreakablebonds of family, has appeared in The New York Times, Psychology Today,Newsweek, The Boston Globe, HuffPost, Scary Mommy,and other leading publications. Her work encompasses hope and humor, grit and grace – the tools that make up her personal survival kit. Jessica Fein writes the Grace in Grief column for Psychology Today and is aTEDx Speaker on Grief Literacy. She is the author of Breath Taking: A Memoir of Family, Dreams, and BrokenGenes. InBreath Taking, Jessica Fein takes readers on a powerful journey through the profound joys and heart-wrenching challenges of love and loss. Jessica lost her daughter to rare disease in 2022.
https://www.jessicafeinstories.com
Show Notes
In this heartfelt episode, Kendra interviews Jessica Fein, author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes. Jessica shares her deeply personal journey, touching on themes of loss, resilience, and the powerful lessons she's learned through motherhood and advocacy.
Key themes include:
- Navigating a Rare Diagnosis: Jessica reflects on raising her daughter Dalia, who was diagnosed with MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibers), an ultra-rare mitochondrial disorder affecting only two in a million people.
- Ambiguous Grief: The emotional complexity of grieving someone who is still alive and how discovering the term brought healing and clarity.
- Adoption Journey: Jessica’s path to becoming a mother through adopting three children from Guatemala and the challenges and joys that shaped her family.
- Family Dynamics and Advocacy: Insights into caregiving partnerships, societal expectations, and the importance of acknowledging emotions openly within the family.
- Healing Through Connection and Legacy: How meaningful gestures, like planting a Dahlia garden in honor of her daughter, and finding community with others facing profound challenges have provided solace and strength.
- Writing as a Tool for Processing Grief: Jessica shares how writing her memoir and essays has been a therapeutic way to process her experiences and connect with others.
Contact Kendra Rinaldi https://www.griefgratitudeandthegrayinbetween.com/
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Transcript
Initial Grief Refusal and Ambiguous Grief
00:00:01
Speaker
But I'll tell you, you know, when we talk about the grief journey at that point, for a while, i was very adamant in the fact that I was not going to grieve my daughter while she was still alive.
00:00:14
Speaker
I would have told anybody who asked that I would not grieve my daughter while I was looking at her. And then what happened was somewhere along the way, I was asked to speak on a panel about ambiguous grief.
00:00:26
Speaker
And if anybody invites me to do anything related to ultra rare diseases or grief, I always say yes, because I like to raise awareness. And so I said, of course, I'll speak on the panel.
00:00:38
Speaker
And then I hung up the phone and I went to Google ambiguous grief. I had never heard of it before.
Podcast's Purpose: Exploring Grief and Hope
00:00:54
Speaker
This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and
00:01:11
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys.
00:01:22
Speaker
I'm Kendra Rinaldi, your host. Now, let's dive right into today's episode.
Jessica Fine's Personal Loss Journey
00:01:32
Speaker
On today's podcast, I have Jessica Fine. She is the author of breathtaking a memoir of family dreams and broken genes. And she is the host of I don't know how you do it podcast.
00:01:47
Speaker
And we will be chatting today primarily about her grief journey with the passing of her daughter, Dahlia. And I'm excited to have this conversation with you. So welcome, Jessica.
00:02:01
Speaker
Thank you. Thank you for having me. I'm glad you are here. I know that having a podcast on the topic of grief and talking about grief might have not been in your plans at all some years back.
00:02:15
Speaker
But since 2022 was the passing of your daughter, Dahlia, and I know you have other grief journeys to share as well, your life has kind of shifted. So if you don't mind sharing with us a little more about you and what your life looked like prior to becoming ah mom?
00:02:34
Speaker
Sure. i will say you're right. I have such a complex grief journey. I have lost three parents, my two siblings and my teenage daughter. So I was really introduced to grief at such a profound way when I was 27 and my 30 year old sister died suddenly.
00:02:54
Speaker
And, you know, I know you asked, what did my life look like before my daughter died? But I will say before my sister died is where I was living in a bit of a bubble, you know?
00:03:06
Speaker
And when she died, she was my best friend. It was like that bubble was punctured. And I saw the world so differently because I saw it through that puncture, you know?
00:03:18
Speaker
And that really changed me because it was like, oh God, the reality that anything can happen at any time, you know, but fast forward, uh, before my daughter, my husband and I had a pretty long road to becoming parents.
Adoption, Diagnosis, and Changed Family Plans
00:03:37
Speaker
Uh, we had five years of fertility treatments, very, uh, creative kinds of fertility treatments, you know, started off kind of standard and went more and more complicated. But ultimately, we changed directions and decided to adopt.
00:03:55
Speaker
And we adopted three children from Guatemala. And we thought the tough part was over. Little did we know that our middle daughter had a really insidious degenerative disease. She was diagnosed at age five with MRF syndrome, which stands for myoclonic epilepsy, ragged red fibers. It's an ultra rare disease.
00:04:21
Speaker
And our lives took a lot of twists and turns from there until she died at age 17.
00:04:35
Speaker
Wow. The part that I read when you said about your life being punctured, I actually had like kind of highlighted that part. Let me see if your book i ah quoted how you mentioned that, that there were many more losses to come, each one shaped by the first.
00:04:58
Speaker
I started to see the world not through my hazy, um i don't understand my own writing.
00:05:07
Speaker
But through the, not through the hazy blur of the bubble, but through the puncture and just well how perspective, how life perspective just completely shifts with those type of situations. And like you said, it just kind of built up on that.
00:05:21
Speaker
Now at the age of five, Dahlia's five, you've adopted, she was just two weeks old when you adopted her. is that correct? No, she was actually, she was two months, two weeks old, excuse me, when we found out about her, but we weren't allowed to bring her back until she was six months old.
00:05:36
Speaker
So we brought her back at six. At six months. So two weeks when you found out about her. And then, so when you find out then at the age of five of her diagnosis, let's let's talk about that impact and the journey of grief that goes into finding out that the idea of what your family is going to look like is not, because you had to deal already with that situation earlier. You go through in vitro, you go through that, you go through losses of like be not going...
00:06:08
Speaker
ah for you know You had um a surrogate. You had you know all these different things. And you go through those losses every time. the id Again, you're your idea of your life is shifting, right? Of what it was going to look like.
00:06:24
Speaker
Okay, shift again. oh shift again. Exactly. yeah And you mentioned something in your book like what you can make a plan and god God laughs, right? I've just read parts of your book, God laughs. And it's true. You make a plan. Oh, yeah.
00:06:36
Speaker
shift again. So here you are, she's five. yeah Tell us how you found out and that journey. Yeah, absolutely. So, you know, I always kind of suspected something was off developmentally and I would, you know, try to get doctors and early intervention and specialists and professionals to pay attention. But my concerns were largely dismissed, you know, and you start to think like, oh, I'm just being one of those parents, you know,
00:07:05
Speaker
But ultimately at age four, she was diagnosed with a hearing loss. And it's funny because at the time I was like, oh my God, hearing loss. Like it seemed like such a big deal. And in retrospect, it turned out to be such a blip compared to what would happen.
00:07:20
Speaker
But because we didn't know why she had hearing loss, we were sent for genetic testing. And that's when this disease was discovered. And I will say at first,
00:07:32
Speaker
More than grief, there was confusion with the diagnosis on so many levels. I mean, first of all, there was a scientific confusion. We didn't understand what it all meant.
00:07:43
Speaker
The doctors didn't have much data to go on because it's an ultra rare disease. And Dahlia was doing great. I mean, yes, she had to some developmental issues, but she was in a mainstream school and she was running and jumping and giggling and you know she was just fabulous. So it didn't make much sense.
00:08:02
Speaker
And for the next four years, while some of her symptoms became more pronounced, things more or less were quote unquote normal. One of my least favorite words, but so be it.
00:08:14
Speaker
And then when she was nine, we went on a family trip. And while we were on vacation, she caught a cold. And that cold quickly spiraled, turned into pneumonia, and landed us in the ICU where she was intubated.
00:08:30
Speaker
she We ultimately, after a very complicated battle with an insurance company, ended up back in our home turf in the Boston area, but she couldn't leave the hospital. And we all moved in for three months.
00:08:44
Speaker
And she, at that point at age nine, had a tracheotomy. So for people who might not know, that's when you have a little hole in your neck with a tube and you breathe through that. She lost at that point her ability to walk and to talk, to eat, and she became ventilator dependent.
00:09:00
Speaker
So now what that meant was that she was what's called 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 seven.
Grieving the Imagined Future
00:09:12
Speaker
And then things changed dramatically. But still she was... just wanting to have fun and be a kid and you know all the that things that kids do, she just didn't want to give into her own grief. And therefore we didn't allow ourselves to give into ours.
00:09:35
Speaker
But I'll tell you, you know when we talk about the grief journey at that point, For a while, i was very adamant in the fact that I was not going to grieve my daughter while she was still alive.
00:09:48
Speaker
I would have told them anybody who asked that I would not grieve my daughter while I was looking at her. And then what happened was somewhere along the way, i was asked to speak on a panel about ambiguous grief.
00:10:00
Speaker
And if anybody invites me to do anything related to ultra rare diseases or grief, I always say yes, because I like to raise awareness. and And so I said, of course, I'll speak on the panel.
00:10:11
Speaker
And then I hung up the phone and I went to Google ambiguous grief. I had never heard of it before. And when I learned that this was a real thing and that we could grieve somebody who was still alive and that that wasn't disloyal and there there was a name for it.
00:10:29
Speaker
It was so powerful because now I understood that it was okay to acknowledge these feelings of loss, to acknowledge that our life looked so different from what we had imagined, to acknowledge that we wouldn't hear our daughter's voice again, to acknowledge all of the losses along the way. And so I was so grateful to understand that not all kinds of grief come with a Hallmark card. There are many, many other kinds of grief.
00:10:59
Speaker
It's so important what you just said of the awareness and knowledge of all the different types of grief that there are. Because like you said, when you don't have that understanding, you feel a little...
00:11:16
Speaker
lost and And even like you said, even guilty of starting to grieve someone if she's still like you're here, like, you know, I'm so grateful that you're alive and that you're here.
00:11:27
Speaker
Yet, there's still this grief that, again, like you said, that life does not look like what happened. you thought it was going to look like your son didn't have a daughter, a sister to play with in the same way anymore, right? There's certain things that shifted. Right.
00:11:48
Speaker
So thank you for sharing about you're your journey with ambiguous grief.
Parenting and Grief Management Challenges
00:11:53
Speaker
Now, how was it then in that moment of as her health is deteriorating, that as parents, you and Rob helped, it you only had Jojo at that time? We had Jojo and Theo. Dahlia was the middle. all mit Middle. So Theo was already in your lives at that time.
00:12:08
Speaker
How did you help the two of them also navigate all you know ah navigate their grief in that experience?
00:12:19
Speaker
Not well. So thank you for asking me because this is one of my biggest learnings. And I credit JoJo for helping me learn this because what happened was as things got more intense, Rob and I decided without ever discussing it, just kind of intuitively that we would were going to what we perceived to be shouldering the burden.
00:12:45
Speaker
We didn't want to put anything else on our other kids. And so we thought we'll carry the worry and the angst and the pain and all of that, and we won't put it on them. And so we, without again, agreeing to it, put on a bit of a strong front and we You know, we we included Dahlia in everything we did. And we, you know, we're very, very much a family of five. And we didn't talk very openly about what was happening.
00:13:13
Speaker
And one night, Rob and I were already in bed and Jojo came into the room and was sobbing. How old was he at that time? How old? um Let me do some math. Yeah, yeah. Teenager, you know, and a young teenager and said, there's something wrong with me.
00:13:30
Speaker
And we said, what are you talking about? What do you mean? And JoJo said, I'm so scared and I'm so angry and I pray and I pray and I pray and Dahlia is not getting any better.
00:13:45
Speaker
But you two are fine. What's wrong with me? And it was like one of those so aha moments. you know A lot of aha moments aren't actually moments. It takes years for them to sink in. But this was a like, oh my God, we have allowed JoJo to think and probably Theo too.
00:14:05
Speaker
that something was wrong with them for feeling all of these really legitimate, genuine feelings. And it's such an important thing that, I mean, I wish Jojo didn't have to point it out to us, but once Jojo did, I've become so much more open with both of them about everything, about even today, you know, about stress or anxiety, anything I'm going through to let them know that, you know, we all have these feelings and it's
Societal Perceptions of Strength and Vulnerability
00:14:30
Speaker
okay. And we could talk about it and acknowledge it. But I needed to be shown that in a really hit me over the head kind of way.
00:14:38
Speaker
you You hit the nail on the head, as they say. It's like as parents, we're always trying to protect our children. Yet sometimes what we do that we think that we're protecting them ends up sometimes not being the right move. Again, we don't have a manual. We don't know. You know what I mean? And I try to have compassion for where we were coming from. I know we thought we were doing right. But we learned.
00:15:00
Speaker
Yeah, we always do. we ah We really are doing the best, ah you know, with what we have and the knowledge we have. And that awareness of being able to then, well, when he brought it to your attention, to be able to validate his emotions by he himself seeing your vulnerability as well as parents and seeing what you guys were going through, then it would make him feel like, okay, I am not...
00:15:23
Speaker
crazy for right for feeling this way to validate somebody else. So the whole thing of like, oh, be strong. You know, these things that people say, be strong. Or when somebody dies and that the first thing somebody says, be strong.
00:15:36
Speaker
I can't stand it. And I get it all the time. People will say to me, oh, you're so strong. And I know people are just trying to you know, be kind or show respect. But what they don't realize is when you tell somebody they're so strong, they then feel like they can't show you any vulnerability.
00:15:56
Speaker
Yeah, no, yeah, it's, it's one of the things like, yeah, we we think we put strong as if it's like a big, you know, ah ah virtue type of thing when it could just be right alongside vulnerability. actually think vulnerability is way higher up than that because you're really being real of what it is you're experiencing while being strong is sometimes putting up a front, a face, you know, it's a way of mechanism of not getting
00:16:27
Speaker
but So, so yeah, so anyway, I'm glad that he pointed that out to you guys and that that shifted then that that dynamic a little bit with with them. So then you at nine, you're going through this, how did you you said one of you guys had to be with her during that
Work Dynamics and Caregiving Partnership
00:16:46
Speaker
time.
00:16:46
Speaker
So did your work dynamics then change in that moment, too? And how did that also Yeah, well, that's such a good question. So my husband and I continue to each work full time out of the house the entire time.
00:17:00
Speaker
um We were fortunate that the state of Massachusetts gave us 100 or so nursing hours week. The problem, of course, is that there's a nursing shortage and we often couldn't fill those hours.
00:17:15
Speaker
But we did have that help. So we had a trained nurse. go with Dahlia to school every day. She went to school all the way through. And during the time that she was at school, I was able to go to work and my husband was able to go to work.
00:17:29
Speaker
And you know it's an interesting one because there was definitely some judgment put on me for continuing to work. There was never any judgment put on my husband. And it's interesting because i was the primary breadwinner.
00:17:42
Speaker
And yet the expectation was that I, as the mom, should be home with my daughter, who, P.S., wasn't even home. She was at school. But I did have, you know, look, there were so many people who were privy to our situation in terms of professionals, doctors and nurses and therapists. And, you know, everybody has an opinion.
00:18:01
Speaker
But for me, I know that I was a better caregiver, a better parent, Because I was working, it allowed me to have my own identity. It allowed me to have a break from a really intense, scary situation and allowed me to do a job that I knew I was good at.
00:18:20
Speaker
You know, sometimes at home, I wasn't so sure, but at work, I knew what I was doing.
00:18:26
Speaker
Right. That's so good what that you just mentioned that because you had a place in which you could feel some elements of success and kind of fuel you and feed your right. So that in these other moments in which you said you do not know what you're doing and that the uncertainty is there. Right. While in the in your work, you could be like, I know if I answered this many phone calls or write these many emails, I still, you know, there's a certainty here. There's an uncertainty here.
00:18:56
Speaker
I need this. and And the part of judgment, because we get judgment throughout, right, in general, but yet we also sometimes judge ourselves and go through that guilt component of like, oh, should I have spent this much time at doing this and not this, you know, those kind of things. So how did you juggle then all this noise from the outside world as well as your own mental conversations, the drunken monkey in your head?
00:19:26
Speaker
Right. You know, I think a few ways. First of all, I was so fortunate that my husband and i worked together beautifully as partners in this really intense situation. And I will say as well, because the assumption from the outside is that mom is the more hands-on caregiver.
00:19:43
Speaker
And in our partnership relationship, my husband was a much better hands-on caregiver than I was. And that's not to put myself down unnecessarily, but it's to say he was exceptional.
00:19:58
Speaker
And there was very highly skilled medical care involved in a day-to-day basis, and he mastered it. And I could do it and did do it, obviously, but he was just better at it.
00:20:08
Speaker
And he was also so patient and so loving to her, and their relationship was so so spiritual and beautiful. um So having each other to kind of pick up slack was a big one.
00:20:22
Speaker
And having those people in my life who have been in my life for so many years, I have friends I've been friends with since first grade, and people who really understood me, they did not understand the situation because nobody could understand that really, if you weren't living in this house. But you know they are a good reality check too.
00:20:43
Speaker
Tell us about your circle then of community.
Community Support and Societal Awkwardness
00:20:46
Speaker
Yeah. Because had they been there for these other losses or is it people that you started kind of adding to your life? tell yeah i I am so fortunate. I have a lot of very close girlfriends who I've been friends with.
00:21:01
Speaker
like my newest close girlfriend I've been friends with only for 20 years. You know, everybody else, it's like, you know, the elementary school. Only 20 years. Yeah, high school. And so they're in many ways the keeper of my history. I mean, when you lose so many people in your life, it's so...
00:21:17
Speaker
important to have others who knew the main characters. And that's why I'm always like, it's hard to meet people now. There's just way too much to catch them up on, you know? So I was really fortunate that I've kind of gathered people along the way. And once you're in my inner circle, I kind of don't let you go, you know?
00:21:35
Speaker
I love what you just said, that they're the keepers of your history. Because I interviewed somebody that um in the film that, which is called Meet Me Where I Am, ah film that's out.
00:21:47
Speaker
There was ah one of the one of the people that he's interviewing, a documentary, ah documentary says that every relationship we have... there Those two people are the only ones that know what's happened. So for example, you and Nomi, my sister also died. My sister was two years younger than I am. So i that dynamic that happens between, let's say, two siblings, the memories you have together when that person dies...
00:22:15
Speaker
The viewpoint of how even that person saw you is also gone. So that sliver of identity is also gone. So in all these re interactions that you've had, each one of these, the ones you know 20 years, the ones you know 30, I don't know your age, so I don't want to keep on going with more ah because I know I'm like, keep going, keep going. yeah ah You know, each one of your interactions is a unique dynamic relationship.
00:22:44
Speaker
in itself as well. So how each one chooses to support you in your grief is also you unique. ah Absolutely. And some people were much better at it than others. And you know, here's the thing, people are uncomfortable and awkward and weird about grief.
00:23:02
Speaker
And it makes no sense because as you you know, grief is universal, right? Every single person is going to experience grief. It's like the most universal thing there is. And it ought to be the strongest connective tissue we have.
00:23:15
Speaker
And instead, people run in the other direction. They don't know what to say, so they don't say anything at all. Or they say, you know, empty, Pablum kind of things.
00:23:26
Speaker
And look, not everybody, some people really understand what it means to sit with somebody in their pain, to continue to show up over time, to be there in those more meaningful ways, but it's hard and it's awkward and we don't like to be uncomfortable.
00:23:39
Speaker
So we avoid it. Yeah. And it's not like consciously, it's subconsciously our mind is there to protect us from discomfort. It just does it. And so we kind of have to override that in order to really be able to sit with someone that's going through grief.
00:23:57
Speaker
And like ah so when you say, you know, sit with someone going through grief and be with someone, share with us some of these ways in which people showed up for you after Dahlia's passing.
00:24:08
Speaker
Yeah, just sure. I'd be happy to. I think it's just so important. And I'm actually, um ah have a TED Talk I'm about to do on this very topic, because I do feel like it's something that is learnable.
00:24:24
Speaker
And look, I was totally awkward and weird about grief before I was personally had experienced it. I mean, I have examples of that, but that wasn't your question. But some of the things people did is number one, don't assume that that we're either going to get over it or that we want to get over it.
00:24:42
Speaker
I don't want to get over any of my grief because it is a part of who I am. Those people are a part of who I am. So understanding that this is a process and that I am going to learn to integrate their losses, not to get over them I think is a huge one.
00:24:58
Speaker
I love it when people send me pictures or videos, even still when I get them of people in my life who have died a long time ago, because when you lose somebody, you don't have the chance to make any new memories with that person.
00:25:14
Speaker
So when somebody shares something with you, now you have a new memory you can add to your memory bank. And that's so meaningful. Another thing is when I tell somebody that I've lost my daughter, and they say, what was her name?
00:25:29
Speaker
And they open a conversation instead of saying, oh, I can't imagine, which shuts down a conversation right away. The most beautiful thing anybody did, which is really exceptional. So I'm not suggesting that you know this would make sense for most of us, but the spirit behind it might be something that resonates.
00:25:47
Speaker
My husband had a colleague who came to our house, we're Jewish, and we sit Shiva for seven days when somebody dies. And my husband had a colleague who came one day and didn't really come in, was more walking around. We have a ah very big yard. It was walking around and was just outside the whole time.
00:26:04
Speaker
Well, little did we know he was kind of scoping out the soil because a few weeks later, he showed up with a truck filled with dahlias, the flower. course, our daughter was Dahlia and planted the most beautiful Dahlia garden.
00:26:18
Speaker
And it's just been such a tremendous gift for us. And my husband has become really, really into the gardening of it and it's grown tremendously.
00:26:29
Speaker
And now we have this beautiful gift that stays over time and reminds us so much of our beautiful Dahlia.
00:26:37
Speaker
I know people cannot see me and I would keep myself muted. But you can see me in the reaction.
00:26:46
Speaker
Oh my gosh. That is just, and it's somebody that he worked with. So that's the part sometimes that I've had with conversations with people that sometimes it's people that sometimes weren't even that close to them that show up in a way that just blows their mind.
00:27:07
Speaker
and like you said, it's like they connect. Now they're, now they're really close. friends Oh, so close. And I will never, I mean, Not only will I never forget that, we think about it all that my house is built with dahlias right now, you know?
00:27:21
Speaker
Wow. Yeah. just so beautiful. Now you can never move. Or if not, going have dig your- Exactly. Well, we dig them up each year, so we'll have to bring it with us. But now we've become like, I do a um ah weekly newsletter and one of the things I do is dahlias spotting and I'm always, people are sending me pictures of dahlias that they see in different places. So, yeah.
00:27:40
Speaker
So it's it's just so um unique. You know each of us can find a way in which we honor it. Of course, your daughter's name is one that also has the name of a flower. And you chose to change.
00:27:52
Speaker
So her name, her birth name was different. So curious, what made you change to Dahlia? What did that resonate with? Her birth name was Daniela. And I actually really liked that name. And we considered keeping it, you know, I thought that was very cute. But to be honest, I had always loved the name Talia.
00:28:10
Speaker
And I had always thought, well, if I ever have a daughter, I'm going to name her Talia. But by the time this, you know, yeah all these years later, then I knew a lot of baby Talias. And i was like, okay. And then it just struck me. live in Boston. You live in Boston. It's a very common in a Jewish community. I've heard a lot of Talias. Is that correct? Yeah. But then I was like, oh Dalia is perfect because the way we spelled it, we spelled it D-A-L-I-A.
00:28:33
Speaker
All the letters of Dalia were in Daniela. So I loved that connection. And then her middle name was my sister Nomi's name. So she was Dahlia Nomi. So even there, there you're also keeping your met sister's memory alive with and put in and you do that, right? ah Yes. Can you talk about that aspect of tradition and what what tradition and your religious traditions, what part has, yeah i'm I'm so emotional right now, still from the Dahlia planting.
00:29:00
Speaker
um ah How, because then a lot of times you, You name, but sometimes you don't put the exact name. Sometimes you use the letter. So tell us what was your choice of wanting to continue that tradition, but actually naming them. Is that correct? Am I like like correct? i I'm not Jewish. Oh, that's great. I love talking about it. So um in the In the Jewish religion, well, if you're Ashkenazi, which I am, you can't name somebody after somebody who's still alive. You only name them for people who have died.
00:29:32
Speaker
And then what some people do is they pick a letter because they might not want it. Like, for example, my mother's name was Zelda. I happen to love the name Zelda. My mother hated it. She was so embarrassed by it, which is so funny because she was such a Zelda, but she always said to us, you better never ever name anybody after me because she hated the name Zelda.
00:29:51
Speaker
So we took the Z and we gave my middle, ah my youngest son's middle name is Zev for Zelda. So people will do things like that. Um, for my eldest, we chose the name Jonah because um,
00:30:08
Speaker
um I had a grandfather which who was Yena, which is the Yiddish way you would say Jonah. And then my sister Nomi, her middle name was Yona, which is the Hebrew word. So we kept it. We just turned it into English. um So yeah, so that's how you do it. And it's, you know, a beautiful tradition because you keep those names. And then of course, you know, my husband's, his father was Jim and he was not Jewish. He converted. So his father was Jim and his brother was Jim, which I know a lot of people do the name
00:30:39
Speaker
after somebody who's alive. And I'm always like, my God, that must be confusing. Like when somebody calls the house and they're like is Jim there? Or, you know? Yeah. The junior. junior yeah Yeah. And of course now we have cell phones, so i'm dating myself, but you know, that was like when they were growing up.
00:30:53
Speaker
so So then here, then you have the Nomi then for Dahlia's middle name. And so you you know that part of, like you said, you like hearing people ask your daughter's name and hearing their name because that's something you do. So you also then continue that with Dahlia, Nomi, you know, you still just. Yeah. And you know, it's interesting. I've spoken with couple people lately who do this thing where they will order coffee online.
00:31:18
Speaker
under the name of the person they've lost so that they hear their name kind of shouted out in the Starbucks or wherever. i always thought that was kind of interesting. I love that. I love that. I'm going to do that at another time because I have not done that with my sister or my mom.
00:31:33
Speaker
I'm going to do that because I like that tradition. what was your sister's name? Zorana. So with the Z, Zorana. That's beautiful. Zorana, yeah. And then ah my mom, Anivia. But but um But I will do that. But then it's interesting because sometimes too, the spelling of people, when be when you're saying it, they might write it differently. But when they're saying it out, you know at least you're hearing it again. So that yeah that would be that would be nice.
00:31:58
Speaker
Okay, so community traditions, and you have that tradition, Siddhant Shiva, that was another tradition that also helped in your grief. What other traditions? tools that you use? Did
Family's Grief Experiences and Support
00:32:08
Speaker
you go to therapy as an individual, as a family? Did you just choose to do your own grief journey?
00:32:14
Speaker
Please share your mourning process, please. Yeah. And so um we did not go to therapy as a family. And I will say one of the things that I learned with my first loss is how even when you lose the same person with the same relationship, it's so individual. Like when my sister Rachel and I lost Nomi,
00:32:35
Speaker
We both lost our sister and yet it was a totally different loss because she meant something so different to both of us. um So likewise in our family, we each grieve in a very different way.
00:32:46
Speaker
um And the most the thing that I'm most conscious of as a parent is to try to make sure that my kids understand that I'm always open for talking to them and that they don't need to take care of me.
00:33:02
Speaker
And the reason why is that when my sister died, I was 27 and I'll never forget one of my mom's friends came to me and said, you need to take care of your mother. Losing a child is the worst thing that can happen to somebody.
00:33:15
Speaker
And I was like, what? What do you mean I need to take care of my mother? Isn't my mother going to be taking care of me? Like I just didn't even get it. I felt so at sea without my sister. I had never lived a day in my life without her. And now I was being told that my loss was lesser than, right? And I do think that siblings are often overlooked.
00:33:35
Speaker
We only had one person who sent something to each of our kids as individual packages, you know, like a cozy throw or whatever it was. And meanwhile, as parents, the community descends and you get do get a lot of attention, at least initially.
00:33:50
Speaker
And i think siblings are often overlooked. And so I do try to make sure that my children know how much I recognize their loss. And I'll even tell them I i lost my siblings because I then lost my other sister as well.
00:34:06
Speaker
so that they know that. um For me, of course, writing has been a big, big, big thing. ah wrote the book while Dahlia was still alive, but I also do write a lot of essays now. I have a column in Psychology Today on grief called Grace and Grief, and I write essays in a number of places as well. But just writing all along has been very useful for me to process and to gain some control over the narrative.
00:34:32
Speaker
And so that's been really important for me. in my grieving process. And what have you noticed has been something that's helped the boys and in their grief for you than writing? What has been something that's helped their journey?
00:34:48
Speaker
I think for my little guy, he's been able to, I call him my little guy. He's now 17, just to be clear. I have a 17 year old and okay yes, he's taller than me. And I told him yesterday when I was picking him up from school, I said, you know, when I see you, like, I know you're really big, but I still see you as this little kid.
00:35:09
Speaker
So for him, he's become really, really into fishing. And I know that I going out there on his own and spending time outside in nature and being away from like all of the, like,
00:35:20
Speaker
energy of being a high school senior with tons of friends and being on sports, but just going out into nature and fishing and having that time alone, I think is really, really important. And for our eldest, therapy has been more useful. And i think also ah giving back. So JoJo became an EMT after Dahlia died, um isn't practicing as an EMT right now, but I think just having that experience and feeling like maybe there was an opportunity to help some other people who were in emergency situations.
00:35:53
Speaker
And for my husband, I'm telling you that Dahlia garden that does wonders. That's his, that's his space of being able to nurture those Dahlias just like he nurtured his daughter.
00:36:04
Speaker
Yeah, exactly. Exactly. And I i will say, i love talking about this stuff because it does make me feel close to my family, but he would, I mean, this would be like his biggest nightmare if he had to do this.
00:36:17
Speaker
Yeah, not everybody. And that's the thing. Like you have a podcast as well. And so do I like not everybody has to do like express it in the same way. Your journey is your own. And it it could be if it's just writing and the only...
00:36:30
Speaker
and The only place that knows what your real thoughts are is the paper and the pen. if That's the only place where that is. Exactly. You don't to publish it. Nothing. Yeah. You don't have to publish it like you did.
00:36:41
Speaker
So share with us that process of choosing to publish this memoir. And what was that? Like, it's only because it's only been less than three years. It has been. But I the time we probably had, you released this, you know, but.
00:36:57
Speaker
But the book was written and completed and agented and sold to the publisher before Dahlia died. And it's not a book about Dahlia's death. It's really a book about Dahlia's life. And so, yes, I had to go in and write the epilogue, but it was something that I did for a couple of years at her bedside when she was, you know, when her disease was progressing quite a bit. So, um so that's, that's about how that, how that progressed.
00:37:22
Speaker
Okay. so i was you were So you were writing already as even your you were were talking of even just processing her illness. That was already that the way you were doing it.
Connecting with Others and Jessica Fine's Work
00:37:33
Speaker
huge thing for me. Because then you were putting it.
00:37:36
Speaker
Now, what how's the aspect of community with other people that have had you, have you found a community with other people that their children also have MRF syndrome? You said you've spoken on panels before and things like that. So have you created a community around that?
00:37:51
Speaker
So not with MRF syndrome. MRF is so rare. So there's two in a million people are diagnosed with MRF syndrome. So it's not something that i I have other people. But I will say that I think that when people are looking for community, it's less about like sharing the exact same disease and more people who are going through it, whatever there it is. But people who understand that, you know, in our case, people living on the precipice, people with really intense medical situations, and then, of course, grief.
00:38:21
Speaker
But I haven't sought community deliberately, but I've met people along the way who have become close. And it's just interesting how you immediately get each other, whether that's, again, people who are in the complex medical situations and then in grief. You just connect. you just You could just speak at a different level right from the start.
00:38:47
Speaker
It's kind of like what you said with your friends from a long time that you just already can kind of start from that aspect. Here the same. Like you already start with the point of really relatability.
00:38:57
Speaker
hundred percent. Somebody else knows that your life has completely changed, that you shift, you know, the way you do things because of this condition. So of whatever condition it is that that person's living. So yeah, you already have a point of commonality. You speak the same language. Mm-hmm. Mm-hmm.
00:39:15
Speaker
Yeah, I noticed that that happens in different aspects of our life. think It could happen with like religious aspects. They're like, oh, okay, I don't have to explain this area of my life. They will get, if I do this, they'll get this, you know, they'll get it.
00:39:27
Speaker
Or if it's cultural, like of wherever you grew up, like if I meet somebody from Colombia, then I don't have to explain my little nuances or my slang that I use in Spanish, which I still have to do with other things.
00:39:39
Speaker
other Spanish speaking people other countries. I still have to explain some of the slang and they have to explain some of the slang to me because it means completely something different in my country, for example. my so ah and So, so I get that.
00:39:52
Speaker
Okay. So as we are closing off, please share with us, how can people get in touch with You you said you're going to do a TED talk. When is that?
00:40:03
Speaker
Oh, well, probably by the time this airs, that will happen because it's happening um in October. But I, first of all, invite everybody to get breathtaking, which you can get wherever you get books on Amazon or bookshop.org or Barnes and Noble.
00:40:18
Speaker
And I'd love for people to connect by um getting my weekly Newsletter where I talk about all kinds of things um related to what I'm working on. So whether that's guests who are on the podcast or my writing.
00:40:34
Speaker
um Also, I always am giving book recommendations because I'm such an avid reader. And you can find me at Jessica Fine stories.com. It's Jessica Fine, F like Frank E I And my podcast is I don't know how you do it.
00:40:49
Speaker
And I'm on social Instagram, Facebook, primarily. um And so all the ways but go to Jessica Fine stories.com. And that's kind of the hub.
00:41:00
Speaker
The hub to be able to link to everything else. Jessica, is there anything else you want to share with the audience that I did not ask you? you've been so, so lovely. And this has been such a great conversation. Thank you.
00:41:11
Speaker
I am so grateful that you came here, shared not only your life, but Dahlia's life and your sister and your mom, your dad, your other sister, like, you know, it's honoring their lives as well as we continue to tell stories.
00:41:27
Speaker
That's also how their life and their legacy continues to live on and impacting other people's lives. So thank you, Jessica. Thank Thank you.
00:41:40
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief.
00:41:53
Speaker
If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone,
00:42:05
Speaker
who may need to hear this, please do so. Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me.
00:42:21
Speaker
And thanks once again for tuning in to Grief, Gratitude, and the Gray In Between podcast. Have a beautiful day.