Jessica Fein’s daughter was diagnosed with an ultra-rare, degenerative disease. This is her story and she is RESILIENT A.F.!
Buy the books: https://theglobalresilienceproject.com/books/
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About the Guest:
Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes, and host of the “I Don’t Know How You Do It” podcast, featuring real, raw, and rare conversations with people whose lives seem unimaginable. She writes the “Grace in Grief” column for Psychology Today, and her writing has appeared in The New York Times, Newsweek, The Boston Globe, HuffPost, and other leading publications. Her work encompasses hope and humor, grit and grace — the tools that make up her personal survival kit.
Links:
Facebook:https://www.facebook.com/jessica.fein.92/
Instagram: https://www.instagram.com/feinjessica/
LinkedIn: www.linkedin.com/in/jessica-fein-b643b09
Personal Website: https://www.jessicafeinstories.com
⚠️ Content Note: Some episodes may contain themes that could be distressing. Please take care of yourself while listening, and don’t hesitate to seek support from a mental health professional if needed.
About the Hosts:
Blair Kaplan Venables is a British Columbia-based grief and resilience expert and coach, motivational speaker and the Founder of The Global Resilience Project. Her expertise has been featured on media platforms like Forbes, TEDx, CBC Radio, Entrepreneur, and Thrive Global. She is named the Top Grief and Resilience Expert of the Year 2024 by IAOTP. USA Today listed Blair as one of the top 10 conscious female leaders to watch and she empowers others to be resilient from stages around the world. 'MyStory,’ which is a television show available on Amazon Prime Video, Apple TV+ and Google Play, showcases Blair's life story. She is the host of the Radical Resilience podcast and specializes in helping people strengthen their resilience muscle using scientifically proven methods and guides grieving high performers with her Navigating Grief Framework. The Global Resilience Project’s award-winning book series are international bestsellers, and her fourth book, RESILIENT A.F.: Stories of Resilience Vol 2, will be published in January 2025. In her free time, you can find Blair writing, in nature, travelling the world and helping people to strengthen their resilience muscles.
Links:
https://theglobalresilienceproject.com
https://www.linkedin.com/in/blairdkaplan
https://www.facebook.com/blair.kaplan
https://www.facebook.com/BlairKaplanCommunications
https://www.instagram.com/globalresiliencecommunity
https://www.instagram.com/blairfromblairland/
https://www.facebook.com/globalresiliencecommunity
https://www.linkedin.com/company/the-global-resilience-project
Alana Kaplan is a compassionate mental health professional based in Winnipeg, Manitoba, Canada. She works in the mental health field, and is a co-host of the Resilient A.F. podcast. Fueled by advocacy, Alana is known for standing up and speaking out for others. Passionate about de-stigmatizing and normalizing mental health, Alana brings her experience to The Global Resilience Project’s team, navigating the role one’s mental health plays in telling their story.
Engaging in self-care and growth keeps her going, and her love for reading, travel, and personal relationships helps foster that. When she’s not working, Alana can often be found on walks, working on a crossword puzzle, or playing with any animal she sees.
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Transcript
Welcome back to another episode of Resilient AF with
Speaker:Blair and Alana. And, yes, we are both here today. Hello. And so
Speaker:is Jessica Fine. Did I say that right?
Speaker:You did say that right. Yes. Yes. I love when I pronounce names right. She's
Speaker:absolutely amazing. I met her through the grief community. She's the
Speaker:author of Breathtaking, a memoir of family, dreams, and broken
Speaker:genes, and the host of I Don't Know How You Do It podcast,
Speaker:featuring raw, real, and rare conversations with people
Speaker:whose lives seem unimaginable. In fact, Alana and I were
Speaker:both guests on her show. She writes the grace and grief column
Speaker:for Psychology Today, and her writing has appeared in The New York Times,
Speaker:Newsweek, the Boston Globe, HuffPost, and other leading publications.
Speaker:Her work encompasses hope and humor, grit and grace, the
Speaker:tools that make up her personnel her personal survival kit. I was
Speaker:gonna say and her personality, which is also true. I'll take
Speaker:that. And and, you know, your
Speaker:story is your story is something,
Speaker:of heartbreak and inspiration, and I
Speaker:wanna invite you to share your story. Okay.
Speaker:Well, first of all, I'm so happy to be here with both of you. Thank
Speaker:you for having me. I'm huge fans as you know, and I loved having the
Speaker:two of you on my show. So, yeah, my story. So I
Speaker:guess, you know, when we think about my story
Speaker:as it pertains to grief, it started when
Speaker:I was in my late twenties. And that was a
Speaker:long time ago, and I have really lived most of my
Speaker:adult life profoundly grieving. When I
Speaker:was 27 and my sister was 30,
Speaker:she died suddenly. I was the youngest
Speaker:of three, and my middle sister was my
Speaker:best friend. And we had been on the phone a
Speaker:couple of hours earlier. I was at work. She was a new mom, and she
Speaker:would call me every day. And I'd be like, I'm at work. Hello? But, you
Speaker:know, so it was. And, she was
Speaker:out playing with her baby, and she went into cardiac arrest and died
Speaker:suddenly. And that, you
Speaker:know, changed everything for me. Not only did it change
Speaker:who I was and how I saw myself, but it really changed how I saw
Speaker:the world. And and I thought that would be
Speaker:the defining bad thing that happened in my life. Like, I thought that would
Speaker:probably be the worst thing that ever happened to me. And
Speaker:it was a defining moment in my life for sure, and it
Speaker:was absolutely one of the worst things that happened.
Speaker:Couple of decades, I lost both of my parents, so
Speaker:relatively young. So over
Speaker:the next couple of decades, I lost both of my parents,
Speaker:so relatively young, and my
Speaker:older sister who went in for
Speaker:a routine breast exam and found out she had stage four lung
Speaker:cancer. So, you know, just kind of huge,
Speaker:horrible loss. And yet none of that
Speaker:was, like, the, quote, unquote,
Speaker:big loss capital, all capitals, exclamation points, etcetera,
Speaker:which was the death of my daughter. My daughter, Dahlia, died
Speaker:three years ago, one week after her seventeenth birthday.
Speaker:And so, you know, I have
Speaker:really learned what it is to
Speaker:to be a lifelong griever. I learned most of what it means to
Speaker:figure out how to deal with the
Speaker:most horrific things one can imagine
Speaker:and have a life from my daughter from watching her,
Speaker:from watching how she had all of her functionality taken away from
Speaker:her over her 17, her ability to walk and
Speaker:talk and eat and breathe without a ventilator, and, ultimately, her
Speaker:ability to move. For two years, she wasn't able to move. And
Speaker:she continued to figure out ways
Speaker:to find joy and to be part of the world and to give
Speaker:off her most amazing sweetness and love and
Speaker:and to really not spend her days curled up
Speaker:in the fetal position, which she had every would have had every right to do.
Speaker:So she was my guide.
Speaker:That's a lot of a lot of loss you've experienced.
Speaker:And what struck me is the different roles you've
Speaker:experienced loss as and, like, the different relationships you've
Speaker:had. So you've you've grieved as a sister, as a best
Speaker:friend, then the grief of your own of losing your
Speaker:only other sister who's a lot who is alive, then
Speaker:being a grieving daughter, and then eventually
Speaker:becoming a grieving mother. Yeah.
Speaker:And, you know, what's one of the things that has been a
Speaker:really interesting perspective for me is having bit lost
Speaker:my sibling at that formative time and then
Speaker:being the mother of two kids who lost their sibling, because I have three
Speaker:kids Yeah. Has been kind of interesting. But the other thing that I
Speaker:learned through the the grief with Dahlia in particular
Speaker:is about other kinds of grief. Right? Because I I had
Speaker:no idea that grief was, like, more than we grieve when somebody
Speaker:dies, like, you know, traditional Hallmark card grief.
Speaker:And learning about I mean, anticipatory grief,
Speaker:yeah, for sure. But the whole notion of ambiguous grief, which was not
Speaker:something that I had any idea I had no idea what it meant. And I
Speaker:lived that for a very long time. Completely.
Speaker:And I wanna speak to something because I had just read an article that you
Speaker:wrote for Psychology Today about the three
Speaker:year anniversary of losing Dahlia. And you
Speaker:talk about something, and I'm hoping you can elaborate on more,
Speaker:about the different milestones that Dahlia reached
Speaker:and and her place in the family and then having
Speaker:her younger siblings now be older than
Speaker:than her. Yes. Right. Because Dahlia was the middle.
Speaker:And so when and and she died, as I've now
Speaker:said it a couple times at 17. And my
Speaker:younger child who's two years younger than Dahlia, when he
Speaker:became 17, and now this week, he's gonna be
Speaker:18, You know, that is so discombobulating, and
Speaker:that's something that I really experienced because, you know, we all
Speaker:define ourselves by our place within our family structure to a certain
Speaker:extent, you know, up until a certain point. So I was, you
Speaker:know, the youngest of three, and, you you know, that's kind of how
Speaker:you how you exist and carry on through the world when
Speaker:you're you know, until you go on and create whatever life you create
Speaker:us away from your nuclear family or your family of origin. But when
Speaker:I became older than my sister,
Speaker:it was just so strange because, of course,
Speaker:I still think of my sister in certain respects as 30. You
Speaker:know? But then I also think about her aging alongside me.
Speaker:So, yes, that was very, very strange. The other thing is that even in
Speaker:Dahlia's lifetime, as my
Speaker:younger son, Theo, as he
Speaker:became developed skills skills and was able to do things that
Speaker:she wasn't. And, you know, a perfect example in the role reversal they
Speaker:experienced is when when Theo was a baby, Dahlia, like, thought he was
Speaker:hers. You know? She was just such the little mama la,
Speaker:and she would, feed him. And, like, she just
Speaker:loved to feed him. You know? And she would help, you know,
Speaker:as he was, like, learning to scribble and whatever. She just loved
Speaker:mothering him. And as she lost
Speaker:her functionality, he, of course, did so much for
Speaker:her. So, you know, she lost the ability
Speaker:ultimately to eat, but but before she, you know, she had a feeding tube
Speaker:from age nine. But before that, when she was you know, she had a lot
Speaker:of tremors and when she would be shaking, he would be now steadying her hand.
Speaker:He would be helping her right. So all these things that she helped him do,
Speaker:and then we watched as he advanced beyond
Speaker:where she would ever get and where she had once
Speaker:been both. And that was really hard. And I think in many
Speaker:respects in those early years, we saw what she was
Speaker:losing based on what he was gaining, right, when they were itty bitty, and we
Speaker:could see him surpassing. Right. Because there's so many
Speaker:developmental milestones that happen when you're young and and having
Speaker:them being somewhat close in age. Exactly. It's like
Speaker:And Yeah. And, you know, I I know a lot of people
Speaker:who have kids with these insidious insidious genetic
Speaker:diseases, and and many of them never develop. Right? From birth,
Speaker:they just don't have that functionality. And the thing that, like,
Speaker:extra twist of cruelty in the Dahlia story is that
Speaker:she was able to do those things, to run and jump and, you
Speaker:know, eat and write and do all these things and speak and
Speaker:play and then lost that. Mhmm. And, you know, we're
Speaker:so used as parents to watching our kids gain all these skills. We're not
Speaker:used to seeing them lose them. Yeah.
Speaker:So it's you had a lot of that anticipatory grief, I'm guessing,
Speaker:as she looked started to lose those skills. And
Speaker:not only were you probably holding your own grief, you're probably holding
Speaker:Dalia's grief too. How did how was that
Speaker:as for both of you, for you and for Dahlia?
Speaker:You know, Dahlia was very much focused
Speaker:on doing what she could do. She wasn't focused on what she couldn't do.
Speaker:Mhmm. And, you know, she loved going to school. She went to school her whole
Speaker:life. And, you know, we ended up having to switch schools, and we
Speaker:sent her to school with a private nurse. And then she was in a school
Speaker:that was on a hospital. Grounds. I mean, this was not conventional school, but she
Speaker:she wanted to be out there. She wanted to be experiencing things.
Speaker:So for her, you know, I think that the griefiest
Speaker:thing for her was losing the ability to eat. That was
Speaker:huge for her. I think in many
Speaker:ways, that was more upsetting for her than ending up in
Speaker:a wheelchair or, you know, other things that she lost. She real you
Speaker:know, and and it makes sense. We all of us,
Speaker:like, food is such a part
Speaker:of, of socializing, of culture, of
Speaker:it's so much more than just, like, what you're putting in your mouth. And in
Speaker:fact, you know, one of the things that I've written quite a bit about is
Speaker:how we had to follow again her lead because when
Speaker:she first got her, g tube and was no longer able to eat
Speaker:orally, we decided that we were gonna, like, shield her from
Speaker:all things food related because we thought that would be so mean to, like, everybody
Speaker:to be eating in front of her. So for quite some time I mean,
Speaker:like, for a couple of years, when it was dinner time, my husband or I
Speaker:would be in the other room playing with her while one of us ate with
Speaker:the with the other kids. And then when she went to this new school that
Speaker:I was mentioning a moment ago that was on the hospital grounds, they had
Speaker:cooking class. And and she was not the only kid with a G2, and I
Speaker:was like, what is that? That's, like, horrible. That's terrible. How can they do
Speaker:that? And the first day that Dalia
Speaker:went to school there, she came home with these cookies they had
Speaker:baked. And she had, like, carefully wrapped four cookies, one
Speaker:for each of us in this, you know, thing, and she handed each one to
Speaker:us, and she was so proud. And we realized she
Speaker:wanted to be part of this. You know? Just because she couldn't eat, we were
Speaker:we were, like, excluding her even further, of course, unintentionally.
Speaker:So from that point on, she became very much a part of
Speaker:the whole food preparation thing. We had got her a chef hat.
Speaker:She was little chef. She Mhmm. My husband because I don't cook. You know? And
Speaker:she would always we never missed a family meal after
Speaker:that up until the night before she died because, you know, we realized
Speaker:that being part of the eating
Speaker:that you know, everything that's involved with that is so much more important than
Speaker:the actual eating morally, eating the food.
Speaker:Completely. I I don't know if Lana knows part of your
Speaker:story, and I know you recently were on a trip.
Speaker:Oh, yes. Is that something that we can talk about it? About
Speaker:because Yeah. You had some you you had a really beautiful experience,
Speaker:and you you did some very beautiful traditions. Yeah. I
Speaker:would love to hear about if you can share about all of that.
Speaker:Yeah. All three of our kids were born in Guatemala. My husband and
Speaker:I adopted all three of them. And,
Speaker:so we had not been back. I mean, my husband and I have been to
Speaker:Guatemala Five times for all those adoptions, but we had not been
Speaker:back with our kids until this past Christmas. And we had
Speaker:been waiting for them to tell us when they wanted to go, and so they
Speaker:came to us and they said they were ready. And I knew that I wanted
Speaker:to do something while we were there to honor Dahlia. I wasn't quite sure at
Speaker:first what it would be, but I was working with some
Speaker:folks in Guatemala City, and we were talking through some different
Speaker:ideas. And they introduced me, to
Speaker:a Mayan priestess in, a
Speaker:part of Guatemala that was close to where Dahlia was born. And what's
Speaker:interesting is that there are a lot of different Mayan dialects.
Speaker:So even within Guatemala, people who speak, quote, unquote,
Speaker:Mayan, which isn't really actually what the languages are called, might not be able to
Speaker:understand each other. But we arranged to
Speaker:meet this priestess, Juana, and to have
Speaker:a traditional Mayan fire ceremony, which what it
Speaker:which is what is done, a, to
Speaker:honor people who have died, typically ancestors. Right? But,
Speaker:also, this ceremony could be used for many other things. It could be used if
Speaker:you wanted help with your business. It could be used, you know, for celebration,
Speaker:for many different things. In this case, it was gonna be a memorial ceremony.
Speaker:And so we met the Mayan priestess in
Speaker:this plaza, which is called Baktun,
Speaker:which is actually interesting because it's what it means is
Speaker:where where the earth ends. Right? So it's kind of like this
Speaker:idea of a liminal space in a way.
Speaker:And it was a very traditional ceremony where she came,
Speaker:and we had a translator, which is a whole other story because that kind
Speaker:of that was, his English our translator's English
Speaker:wasn't great. So I had to do some workarounds there. But in
Speaker:any event, she came and she set up
Speaker:this very traditional altar. And what they do is they set up things that
Speaker:would appeal to the person they're reaching, in this case, Dahlia.
Speaker:Right? And so there's some things that are always there, like, there's
Speaker:different kinds of incense and, different color candles depending
Speaker:on what kind of ceremony it is. And there was beautiful
Speaker:flower petals and a circle of sugar candy sweetness
Speaker:because the idea is that when you burn it, this is what's going up and
Speaker:reaching the spirits, and they want it to be, you know, pleasing to the spirits.
Speaker:And then based on the direction of the fire and the way the ashes
Speaker:burn, she, Juana, the priestess, is getting messages
Speaker:from the spirits, from Dahlia. And and she's chanting it was
Speaker:forty five minutes. She's chanting in this dialect that, of
Speaker:course, we didn't understand. And then the translator is understanding
Speaker:them, but he is then translating them to Spanish, which we're then having him
Speaker:put Spanish into the, into the phone so
Speaker:we could do the translation. I mean, the whole thing was, like, crazy. But in
Speaker:any event, it what was fascinating about it was
Speaker:it felt so authentic to all of
Speaker:us. And it was so weird to me because, you know, we're
Speaker:Jewish, and we had had a very traditional Jewish funeral as I've had for every
Speaker:member of my family. And I know those songs, and I
Speaker:know the tradition. I mean, I know it far too well, honestly.
Speaker:And yet this, where we did not understand one thing that the woman was
Speaker:saying. We were in a place we had never been before. Everything
Speaker:was just so foreign, and everything was so right.
Speaker:It felt so much more authentic to
Speaker:us. And I think part of that is because we knew that this was, you
Speaker:know, the language Dahlia probably heard first. We were there in
Speaker:Dahlia's homeland. You know? It just there was just such a feeling
Speaker:of this this needed to happen.
Speaker:Wow. That's pretty powerful. Yeah. And
Speaker:and you you brought up that point of just, like, the different cultural
Speaker:ways people grieve in their traditions. And so to
Speaker:go from something which is not so foreign to you,
Speaker:like the Jewish way of of mourning and which
Speaker:I personally find is like a beaut I think Jews Oh, yeah. Well, no. I
Speaker:I my nickname is Shiva girl. I'm the biggest Shiva fan
Speaker:in the world, so I could talk about Shiva all day long. Wait. Wait. That's
Speaker:like a superhero character in a I am Shiva Girl. Oh, and by the
Speaker:way, I will tell you. The first time we actually did come up with the,
Speaker:where Shiva Man preceded Shiva Girl, when I was sitting my first
Speaker:loss, three months before my sister, Nomi, that I was talking about
Speaker:earlier, was my stepfather. He died three months before she did.
Speaker:And we were doing a traditional Shiva. And so for listeners who might not know,
Speaker:if you're doing, your prayer twice a day, you need to have
Speaker:what's called dominion. Right? So you need to have 10 people who, depending on
Speaker:how religious you are, they may need to be 10 men. In our case, that
Speaker:wasn't, true. We women were considered part of the minyan,
Speaker:but you have to be Jewish and you have to be of a certain need,
Speaker:you know, an adult. And so anyhow, one day, we didn't have
Speaker:a minyan, and we weren't gonna be able to do the shiva. And the rabbi
Speaker:pulls out his beeper. This was a long time ago, pre cell phone, and, like,
Speaker:you know, dial somebody. And the guy shows up, and I'm like, who are you?
Speaker:What are you? And this guy is on, like, essentially speed
Speaker:dial to show up and complete a minyan if they don't have them. And and
Speaker:we said, okay. That's a superhero. Right? That's like Shiva
Speaker:guy. Thinking of, like, the impossible theme
Speaker:song, like, do do do do, and it's like,
Speaker:Shiva. Oh gosh. Amazing. Yeah. Yeah. That's
Speaker:fantastic. I to be honest, I forgot what my question was because we went on
Speaker:a Sorry. A whole cycle. Cycle. I was saying it was yeah. I
Speaker:I do love Shiva. I mean, in in fact, as I've I've had a few
Speaker:friends recently who have lost people close to them who aren't Jewish,
Speaker:and it's always so weird to me that, like, the next day, they're kind
Speaker:of alone or, like, back to usual. And I'm like, wait. Where's the
Speaker:week? You need the week. Yeah. Who's feeding you? Yes. Who's bringing
Speaker:you food? We have this is just like a quick aside. My best
Speaker:friend, her, her mom is known
Speaker:for making, like,
Speaker:for shivas, making this banana chocolate chip bread. They
Speaker:call it and so we call it shiva loaf. Oh my god. That's
Speaker:so funny. Funny because, like, we Alana and I had so much death in such
Speaker:a short period of time. And so as soon as someone died, I'm like, Alana,
Speaker:like You've messed up your Get get get You need the shiva loaf. Tell your
Speaker:friend to make the shiva loaf. Like, let's order some shiva loaf. That's
Speaker:so funny. I I mean, there was, like, there were years where I was like,
Speaker:I if I see another shiva like, I cannot because, like, it's not a shiva
Speaker:until the shiva loaf shows up. But it sounds like shiva loaf may be better
Speaker:than even shiva. The shiva loaf is fantastic. I also got it rebranded
Speaker:as a housewarming shiva or a housewarming loaf once, which was
Speaker:fantastic. Loaf. Loaf. Anyway but it's it's
Speaker:different than the way, I guess, like, in my end
Speaker:Guatemalan traditions, the way they grieve and and honor. And
Speaker:and I find that it's something so beautiful
Speaker:with loss and grief is just seeing how folks are
Speaker:honored, whether it be through a traditional ceremony, whether it be
Speaker:through a Shiva, whether it be through a good written
Speaker:obituary. Just Yes. I totally agree. And in fact, one of the
Speaker:things I'm working on now is a project that's exploring throughout different cultures and
Speaker:different religions, different belief systems, you know,
Speaker:how how we connect to the people we've lost. Yeah.
Speaker:And it was so Dahlia, you said you just felt,
Speaker:like, so right for Dahlia to have that.
Speaker:I'm I'm curious what your other two
Speaker:kids thought about it. Well, I mean, my eldest was like as we
Speaker:left, said to me, I wanna be buried in Guatemala.
Speaker:And I'm like, okay. Let's assume that's not a decision
Speaker:I'm gonna be making. Let's assume that's gonna be right? I was like, I don't
Speaker:need to to know about that. My time. Yeah. I was like, wait.
Speaker:No. But I thought it was interesting that that was kinda, like, the first thing
Speaker:that that was I think it was very important to both of them. I think,
Speaker:you know, being in Guatemala was much more important to both of them than,
Speaker:I shouldn't say more important. I should say I was happy to see how
Speaker:they connected from the second they got off the plane with being in Guatemala in
Speaker:general and then with this experience in particular.
Speaker:Completely because I mean, how old were they when you adopted
Speaker:all three of them? My eldest was,
Speaker:was a year and a half. Mhmm. And
Speaker:my and Dolly was our youngest. She was six months.
Speaker:And then our youngest, our little guy, was 10.
Speaker:Okay. So all quite young. Newborn. Yeah. All quite young,
Speaker:yet still lived some life in Guatemala, and it's
Speaker:in their bones and in their In their brain wiring, for sure. Yeah. In
Speaker:their genetics and their brain wiring. So that makes sense that they felt
Speaker:this, like, almost Yeah. Sense of
Speaker:I don't wanna say home because it might be. Maybe it is, but I don't
Speaker:wanna put words into their mouth. I think they also loved that
Speaker:they were surrounded by people who looked like
Speaker:them. Yeah. You know? For example, one of the
Speaker:things, in Guatemala, for the
Speaker:most part, the people are shorter than they are here,
Speaker:and my kids are short. And, my
Speaker:husband's quite tall. You know? And I think that they loved there. They were kinda,
Speaker:like, taller than a lot of people. You know, that just isn't something they are
Speaker:accustomed to, and that felt good to them. And they, you know, they liked being
Speaker:in the majority. It was really interesting because, you know, my husband and I were
Speaker:in the minority. It was a total inverse. And the other thing is, you know,
Speaker:where we were, we traveled quite a bit. It was not Americanized. It was amazing
Speaker:because so much of the time we travel places and everybody speaks English and the
Speaker:this was not that. And it was really great. Wow. I
Speaker:think that's so beautiful. And I I mean, even, you
Speaker:know, for your other kids to experience that.
Speaker:And what a gift for you to bring them there. Do you We can't
Speaker:wait to go back. Yeah. Just saying, do you have plans to go back? Oh,
Speaker:totally. I mean, the only thing is I will say in the,
Speaker:spirit of being fully honest, I ended up, like, the last couple days
Speaker:getting pretty sick there. So just like the you know? So I'm a little nervous.
Speaker:But once I get over that, yes, we're gonna go back. And in fact, I
Speaker:kind of fell in love with Antigua, which was, at one point,
Speaker:the capital of Guatemala now or it's Guatemala City, but it's just the
Speaker:most beautiful, beautiful city. And, we found a school where
Speaker:like, an intensive Spanish speaking school or Spanish language
Speaker:learning school. And, so at least my husband and I are really interested in doing
Speaker:that. And then, of course, you know, we've been talking about, oh my god. What
Speaker:if we have to leave this country just because, you know, we're a little crazy
Speaker:right now. We won't go into that. But we're like, how funny would it be
Speaker:if we end up moving to Guatemala? I mean, I think more, like, not even
Speaker:funny, but, like, how beautiful. Yeah. Yeah. Beautiful
Speaker:and and something we would not have seen coming, but you you never know.
Speaker:Well, there's a lot of things happening that no one has seen coming. So
Speaker:Yeah. It's scary. I'm really scared. I'm really scared for my kids.
Speaker:Yeah. What like, do you mind if we talk about that briefly? Because I
Speaker:think it's really relevant. So for those
Speaker:of you listening, Alana and I are Canadian in in Canada.
Speaker:So our experience with what's happening around the world is
Speaker:only what we see on the news.
Speaker:What's it like for you having two
Speaker:visibly nonwhite children I assume you're doing it.
Speaker:We also have gender stuff in my family too, which is right now, you know,
Speaker:I mean, we're just watching DEIP erased and erased and erased,
Speaker:and it's so scary. I I
Speaker:I, you know, I try to tell myself that,
Speaker:you know, don't get carried away. Don't let the thoughts, you know, make you
Speaker:crazy. But then you read about people who are just, like, swept off the streets,
Speaker:you know, because they, you know, are just I'm like, you guys have to go.
Speaker:You have to always have your, you know, US documents with you, your citizenship
Speaker:papers with you. Like, it's Do they have they carry that stuff with them? I
Speaker:want them to. I mean, I don't think most people I mean, as the, like
Speaker:But are they doing it? You know,
Speaker:they have pictures of their passports on their phone. Right? But, you know,
Speaker:it's scary. It is very scary. I I worry a lot,
Speaker:and I think it's gonna get a lot worse. I mean, we're like we've got
Speaker:it all. We've got, like you know, there's a lot of antisemitism
Speaker:now. Mhmm. For sure, you, you know, there's
Speaker:so much look. If you're not, like, a white
Speaker:heterosexual Yeah. Cis
Speaker:male. Yeah. Which of the four of us, one of us fits that bill.
Speaker:Right? So so my husband will be fine. Although he's Jewish. So He's
Speaker:Jewish, so not really. Yeah. Yeah. Yeah. Top of the
Speaker:food chain. Top of the food chain. Right? Like Yeah. You know, it's
Speaker:I can't even imagine how you feel navigating
Speaker:that. And, I mean, I
Speaker:know a lot of people who feel the same way. Like, they're scared and they
Speaker:don't feel safe, and I can't imagine what it what it feels like to not
Speaker:feel safe for for you or your family in your home, like, in
Speaker:your hometown. Right? You know? And and I also I just feel so sad for
Speaker:my kids that this that they are seeing this, that these are the
Speaker:leaders. You know? And and when you read
Speaker:about the way they speak about people who are
Speaker:different, it's like every every day there's something new. I mean,
Speaker:now getting rid of so many rights for people with
Speaker:disabilities. I mean, that you know, I think about what oh my god.
Speaker:Like, for example, Medicaid.
Speaker:Right? When you have a child who is severely
Speaker:disabled, nobody could afford I mean, we had in home
Speaker:nursing care around the clock for eight years. You know? I mean, you're all
Speaker:on Medicaid. Doesn't matter what you know, everybody's on Medicaid if in
Speaker:that situation. And when now with the, you know, Department of
Speaker:Education being dismantled, I mean, I don't I know this isn't a political show. No.
Speaker:No. It's but it's a it's it's resilience. That's what we talk about. Yeah. So,
Speaker:you know, Department of Education being dismantled means that
Speaker:disability rights for children in schools. And, again, you know, so
Speaker:now I have an one of my kids is has more
Speaker:typical, like, IEP and disability rights in that respect. But then I I
Speaker:think about, you know, what would be happening to
Speaker:Dahlia. Yeah. It's so scary. Anyway
Speaker:That is very scary. Yes. We do have a little cottage in Canada, so who
Speaker:knows? Maybe we'll come in Come on over. Papers with you guys.
Speaker:I I mean, I think this conversation, like, it can go
Speaker:on because there's so many different, like, things happening.
Speaker:And, you know, we are brought here to today to talk
Speaker:about your journey, you know, with grief. And,
Speaker:you know, what's happening is a type of grief. It is a type of grief.
Speaker:And, again, you know, what we were saying at the beginning in terms of, like,
Speaker:I thought grief was what happened when somebody died. And now realizing, my god,
Speaker:we are all grieving. There is a lot to be
Speaker:grieving. And and even even the more Hallmark
Speaker:Hallmark card traditional grief, especially now, you know, at
Speaker:this age, everybody's a griever. Right?
Speaker:And if they're not, they will be. Right? I mean, it's the
Speaker:most universal thing, as you guys know. And it's just we all Great equalizer.
Speaker:Yeah. It's just like the pandemic, an equalizer. Like, no one is immune.
Speaker:Nobody's immune. And what is strange is that
Speaker:given that it is the great equalizer and it's I call it
Speaker:an equal opportunity emotion, it's so strange that we're
Speaker:just so weird and awkward and uncomfortable and don't know what to say or do
Speaker:and don't wanna talk about it. You know, it's like that we should all be
Speaker:fluent. Well, because of the work you do and the
Speaker:work we do and that our fellow other, you know, grief experts are
Speaker:doing, the conversation is starting to become more normal.
Speaker:And we're still gonna be awkward, but maybe we'll have more tools because grief
Speaker:is awkward. Grief is awkward. Right. But and and even
Speaker:just knowing that we can say, this is really weird. Like, I feel really uncomfortable.
Speaker:And that's like, I am really fucking sad and, like, admitting it and,
Speaker:like, not functioning. And it's it's it's really interesting to even
Speaker:see the conversation change from, like, for us, like, from six years ago
Speaker:when my life kinda started to fall apart to now and seeing how
Speaker:more comfortable people are, but we still have a long way to go. And I
Speaker:wanna thank you for the work that you do and the writing that you do
Speaker:because it's helping pave that way.
Speaker:Well, thank you for what you guys are doing too. And I wonder if you
Speaker:think that it really is that the conversation is changing and people are getting more
Speaker:comfortable or if it's that you know people who are
Speaker:in the grief space. So in your world, it it's
Speaker:more. I think it's p I like, on social media, for example, and I'm a
Speaker:vintage millennial. So, like, I'm of the generation that's starting to be more comfortable
Speaker:talking about the things that aren't just sunshine or rainbows. But
Speaker:I'm seeing more people that aren't grief professionals
Speaker:showing up and sharing their feelings publicly about what they're
Speaker:going through. Mhmm. So I think it has a lot
Speaker:to do with also people like us who are comfortable sharing.
Speaker:Yeah. It's like this unwritten, but actually written because it's Facebook statuses or
Speaker:whatever. Like, permission to show up and share all the
Speaker:things that are happening, the good and the bad. And so I'm seeing a lot
Speaker:of people in my my, like, cohort of age and
Speaker:and younger really sharing everything and
Speaker:using social media as an outlet to express their
Speaker:feelings. And I think it's really beautiful. Yeah. I do
Speaker:very normalizing. So normalizing. And I've met such
Speaker:amazing humans this way through social by people who are
Speaker:taught, you know, being real. Yeah. And I mean, even if those people who aren't
Speaker:comfortable making a huge Instagram post when people like us
Speaker:or other people show up and share their feelings, it may be that bridge
Speaker:to give them permission to feel comfortable to get a therapist or
Speaker:to acknowledge what they're going through. And that's, like, our whole
Speaker:purpose. And so, yeah, I do think the conversation
Speaker:conversation is changing. And,
Speaker:yeah, and this conversation will hopefully help move the needle even more.
Speaker:And, Jessica, before we wrap up, why don't you share
Speaker:a piece of advice maybe for mothers who are at the
Speaker:beginning of a journey similar to yours was with,
Speaker:Dahlia? Yeah. It's hard to just come up with
Speaker:one, but I would say that this is going
Speaker:to define so much of your life. Like, yes. That's
Speaker:true. It's gonna define a lot, but it does not define you, and
Speaker:it does not define your child. And I think continuing to
Speaker:find those things outside outside of the disease. And if if it's
Speaker:a chronic illness, that can be hard. Right? But to find
Speaker:those things that have nothing to do with it, that bring you joy, that
Speaker:create meaning, that, you know, give you beauty, it are
Speaker:so important. And those will become perhaps smaller and more
Speaker:ordinary things, but they'll become things that
Speaker:really feel extraordinary. And so I would say
Speaker:also for the parent to have something that
Speaker:is just hers or his, something that, you know, maybe
Speaker:you did before or that you want to to kind of take
Speaker:on, whatever it is so that your whole world doesn't
Speaker:become this one thing. That's beautiful advice.
Speaker:Thank you. And thank you for joining us on today's
Speaker:episode. Having me. Yeah. And thank you to everyone who took the time
Speaker:to listen to Jessica's
Speaker:story, to, you know, follow along all of our shows
Speaker:or maybe you're new here. Hi. Welcome. Just know
Speaker:that it's okay to not be okay. You you're gonna get through those
Speaker:dark days. I promise. We're gonna hold your hand.
Speaker:Let the Global Resilience Project and this podcast be that lighthouse in
Speaker:the storm. And just remember, friends, you are
Speaker:resilient AF. Thank you.