Two Moms Get Real: Grief, Hope, and Fierce Joy, with Morgan Motsinger and Jessica Fein

On a TEDx stage in Concord, Massachusetts, two mothers met and discovered they shared a deep bond – both had lost teenage daughters. In this intimate conversation, Morgan Motsinger and I explore what happens when life's bubble of safety gets punctured, how to navigate ongoing loss while caring for a child with a degenerative disease, and why it's so important to give ourselves permission for joy even in our darkest moments.

We dig into the destabilizing events that change how we see the world, what it means to hope when circumstances feel hopeless, and why comparing our grief to others' never serves us. Morgan shares her insights from positive psychology about human flourishing, and together we explore how to remain open to life's beauty even after experiencing profound loss.

This conversation touches on:

• The different "flavors" of grief and how they shape us
• What happens when your worldview gets shattered
• Finding hope that isn't tied to external circumstances
• The importance of maintaining your identity beyond caregiving
• Why joy isn't a betrayal of grief
• The power of being a "student of yourself"
• What meaningful self-care actually looks like

Learn more about Morgan:

Website 

Instagram

Youtube

Morgan's TEDx Talk

Jessica's TEDx Talk

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Music credit: Limitless by Bells

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don't Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. 

Welcome back to the show. Today's episode is a bit unusual. Morgan Motsinger and I met backstage at a TEDx event where we were both giving talks. We immediately recognized how much we share in common. We both lost our teenage daughters, but that's just the beginning.

So much of how we look at life is the same, and there are some ways in which it's a little bit different. Morgan and I decided to interview each other. We talk about what it means to find hope when [00:01:00] circumstances feel hopeless, how to care for ourselves while caring for others, what it means to find joy alongside sorrow, and so much more.

And heads up, this is a no holds barred conversation. We get right to it. Morgan is an entrepreneur, mother, and lifelong learner. She hosts the “PS We Expire” podcast. Leads workshops and retreats and shares tools for improving mental health and pursuing a joy filled life. It's my pleasure to bring you Morgan Motsinger.

Morgan Motsinger: So we both have dead kids. 

Jessica Fein: We both have dead kids. Is this how we’re kicking off? Okay, we are diving in. Alright buckle up because I can tell this is going to be quite the conversation. I mean, I have to tell you, so we, you know, obviously were together recently on the TEDx stage speaking in Concord, Mass. And when I got the list of who else was going to be giving TED talks that evening, and I read about everybody's topics and I saw you [00:02:00] and I was there talking about grief literacy specifically.

So, it kind of encompasses all my grief, of which there is no shortage. But when I saw you there and read about you and that you, too, have a daughter who had died. Mine at 17, yours was 14. I thought, oh God, this audience is in for something tonight, you know? And then you did either put us on back to back or spread us out as far as possible.

Morgan Motsinger: Well, you, I like the phrase, I can't remember who, it was a woman who speaks a lot about grief, but the phrase that she coined and uses quite a lot is like, it's not the bummer Olympics. But you definitely, like, if it was, you would definitely be taking home the gold. Do you want to share, like, your first kind of experience with grief?

And I'd be curious to talk about, like, how grief changes. And it's different from relationship to relationship and how it's evolved over the years as you've just had, like, as it's piled on. 

Jessica Fein: Yeah, yeah, definitely. [00:03:00] And you know, it is so interesting because we always say, right, I like that it's not the Grief Olympics and, you know, it's not a contest and all of that kind of stuff.

And yet, if it were, I know, like, the thing nobody wants to be taking home the gold for. That is for sure. So yeah, I mean, I had had a few deaths in my teens that are very, for lack of a better term, conventional. My grandparents died. And then I had a couple of real doozies. My first cousin died and she was in her thirties, followed by my stepfather, who was in his sixties and was sick.

And Was really like a father to me. I was very fortunate. I grew up with essentially three parents, my mother, my father, and my stepfather. So I had just been kind of in the throes of losing my first cousin, losing my stepfather, going through it all with the people closest to me, most notably my sister, and.

Three months after my stepfather died, see this is even more [00:04:00] than I mentioned in the TED talk, three months after my stepfather died, just a couple of hours after my sister and I were chit chatting about absolutely nothing on the phone, she died. Age 30, I was 27, and she died suddenly. She was out with her one year old daughter at an indoor playground, and she went into cardiac arrest and died.

And that was A, the tear me to the ground, tear me open first kind of loss, B, knock me off my feet in terms of not expecting it, and C, the okay, I get it now. anything can happen at any time. We had really been like hand in hand through the losses that directly preceded it. And this was just unfathomable.

So that was the one that, as I write about in my book, punctured the bubble I had been living in. And then I started to see things through the clarity of the puncture. Because my whole [00:05:00] worldview changed. Before I was in this beautiful, hazy bubble, and believe me, if I could have lived my whole life in a hazy bubble, I would have.

So that was number one. And then it's been a series, some expected, some not, some after short illnesses, and some, most notably my daughters, after a very, very lengthy, insidious, horrific illness. And so now I have lost my three parents, both of my sisters, and then most recently my 17 year old daughter. I'm so sorry.

It's a lot. And you know, I feel like sometimes, well, there are other people who have lost their whole family, but I feel like when that happens, one of two things is true. Either their whole family was together and there was some kind of horrific accident or something. This was like one by one by one by one or, and I know families where there's some kind of genetic condition, some kind of diagnosis [00:06:00] that.

strikes multiple members of a family. But this was not that. These are different reasons. And my daughter Dahlia was adopted. We weren't even genetically related. Yeah, so that's my broad brush stroke overview of grief. Tell me yours. I showed you mine. Show me yours. 

Morgan Motsinger: Well, let's see. Similarly, we had grandparents when I was a kid, but not close to any of them.

Really close enough to be there in the experience. My dad had prostate cancer for several years and my parents live on our property. And so particularly the last six months of his life when things were really tanking, I was there for that and was there the day that he died. It feels like it's, I suspect anyway, a different flavor of grief.

when you're anticipating it and you know that it's coming when it's like this looming promise that they're going to pass versus a sudden unexpected grief. So my, my dad died in October of 2021. And then my daughter, Annie died in December of [00:07:00] 2022. So in, in a lot of ways, I think the going through what I did with my dad was good preparation for myself and also for my husband and my two other children.

Where it was like, okay, this is an opportunity for us to talk about what this experience is like. We could probably be really, um, direct in the way that we're talking about death in this conversation, but like, being in the living room with my dad's body for hours and hours after he died, Was a really important experience so that when Annie died at home I wasn't panicking about like what am I supposed to do next, or we have to hurry and call the the mortuary to come and pick up her body and stuff you know, it was it was much more I wouldn't say chill, but like much more relaxed and present and peaceful. Because I knew-ish what to expect with her.

Jessica Fein: That is so interesting because I have not really thought about it in those [00:08:00] terms before, but I can relate to it because I was with my mother in her living room, same as you described, for quite a while as she died and after she died. And Dahlia did die at home as well. Whereas the others were in the chaos of the hospital or, you know, just Not even, not even that with my father and my one sister where they were in public places, you know, when it happened.

Yeah, I mean it's amazing how there are the flavors and the nuances and I don't believe there's a better and a worse, so to speak. But there are conditions that tear us apart in a different way, especially, I think, when you're kind of just doing your thing and the phone rings and it's like, wait, what?

Morgan Motsinger: Yeah. Can you talk more about that puncture hole? That's such a great metaphor. 

Jessica Fein: I feel this so strongly because I do think that my first sister, Nomi, that her death changed me. [00:09:00] More than any of the other deaths and you know, it's interesting since we're speaking since we have just jumped in but we've already decided We're just saying what we're saying I'll go there, which is you know Anybody you ask it's just kind of common Accepted truth that the worst thing that can happen to somebody is that their child dies I mean that people will say that all the time single worst thing that can happen is to watch your child die It's out of order.

It's this that's it now. I don't like to get into grief hierarchy Because I do think circumstances play such an important role and because loss is loss and you know, somebody can lose their 98 year old grandmother and that can tear them apart and leave them on the bathroom floor, whatever. But I will say that it bothers me when people say that because of what we're talking about.

Because because I think, for example, sibling loss is one of the most horrendous things that can happen to somebody, like unexpected young sibling loss. When we talk about the losses that shape [00:10:00] us, which are really because they're the deaths of the people who have shaped us, right? And again, I don't want to be arguing like, which is worse.

All I'm saying is, I don't think we can say unilaterally that one kind of loss is quote unquote worse than another for sure. Because of that, because my sister and I were so close because I had the amazing luck to have the person who was my sister also be my best friend. You know, the person who I had never walked a day on this earth without.

right? And so she was three years older than me. So for me, even though I had had, look, I mean, it wasn't like the most charmed existence, but it was a pretty charmed existence, to be honest. And that's why I say I was kind of plodding along in my hazy little bubble and everything was hunky dory. And so this tearing of the fabric of my life of understanding of there is no Rhyme or reason that we have zero control, you know all those things that to experience it So viscerally and now I'm mixing [00:11:00] my metaphors with my hazy bubble and my tearing of the fabric But bear with me so that after that after that bubble was punctured.

I did see things differently I did understand that anything can happen. I did understand that we can imagine our futures to look one way And that imagining may be nothing more than fantasy. And I understood that there are no guarantees. I just, I understood it viscerally after my sister died. And I do think that had I not experienced such profound loss, Before my daughter, Dahlia's diagnosis, perhaps some of those understandings that I was able to integrate all those years earlier, it may have been even more complex than it was.

Morgan Motsinger: I think that makes perfect sense. The thing that you said about it has to do with the relationship between you and the person who died that makes it feel the way that it feels. So someone who is estranged from their parent will probably not have the [00:12:00] same experience of their death as I did with my dad and we were very close.

With Annie having over a decade between her diagnosis and her death is a different experience than someone losing their 14 year old to, you know, suicide or something like that. It's a different relationship to what you're anticipating is coming. And I like to think about it as like the destabilizing event.

You know, and so some people will have this type of shift in their perspective on reality and their place in the world through something different than death. But for me, it definitely was my daughter's diagnosis that was the shifting for me that changed how I was like, am I safe in the world anymore?

Is anything okay? Can anything remain untouched from the possibility of pain? 

Jessica Fein: Exactly. I love thinking about it that way with what is that destabilizing event. But the other thing that you and I have in common is that we watched our girls lose. Functionality. I don't know about you, but I don't know many people whose [00:13:00] kids lived to be teenagers who had the degenerative aspect.

And so there's so much grief we had before the capital G grief. 

Morgan Motsinger: Yeah, I like to think about it as like little losses or saying goodbye in increments. The only other thing I can think to compare it to is someone who has experience with a loved one who develops dementia or Alzheimer’s, where you watch the person that you knew slowly disappear and their ability to care for themselves slowly disappear.

Jessica Fein: Exactly. 

Morgan Motsinger: And that's the only other context where I can think of that that would be the same kind of slow degeneration of skills and connection, really. 

Jessica Fein: Yeah, I agree. And it's horrible in both situations and when you're watching a child who is at the same time learning and growing and losing. Right? 

It's a whole different kind of thing rather than in the final act of a long life.

Morgan Motsinger: Yeah, the question that kind of popped up for me is like, when this [00:14:00] destabilizing event happens, how do we keep ourselves from becoming completely mired in, so the four words I wrote down are cynicism, hypervigilance, fear, and worry. And I'm curious about if the dynamics are different for someone who hears our story but hasn't experienced a destabilizing event or loss like that themselves versus someone who has.

I don't feel the same level of worry for my other children that I think I would have if I hadn't gone through experiencing the death of a child and being on this side of it, if that makes sense. 

Jessica Fein: Do you not feel the same worry because most things that happen? In this world, the vast majority are not going to be as bad as what you've already witnessed, been through, experienced, or is it the polar opposite, which is you've been there once and you understand how these things can play out.

Like I could see it being either end of that spectrum. 

Morgan Motsinger: And I think it might be both. Like I told this story [00:15:00] before, but I remember going on a walk maybe the week after Annie died and there's this particular house that there's a German Shepherd that sometimes shows up. And usually stays on the lawn. But one time I was afraid that it was going to come at me.

It, you know, came out into the road and was barking at me. And I was really afraid. So the week after Annie died, I'm on this walk and I'm approaching this house. And I'm feeling this fear rise up in me about this dog. And then it didn't have the same sharpness to it at all. Because I was like, Come at me, bro.

Like, I've already gone through the hard thing. Like, you know, like, getting attacked by a dog isn't gonna be as bad as, like, what I just went through. And so, in some ways, like, I do feel a little bit, like, what do you got, world? Like, I've been to those deep, dark places, and I'm on the other side of it, and, like, I'm okay.

Like, I made it through. not unscathed or untattered, but like I'm still here and I still view the world as like a hopeful, beautiful place. 

Jessica Fein: All right, well, we need to talk about that because so do [00:16:00] I. Yeah, very much so. And I'll tell you that after my sister died a few years later, my mother and I were flying from Boston to Chicago.

So I had the unusual experience of watching for years how my parents integrated. The death of their daughter that then later became so relevant to me. But on this flight, it got very, very turbulent. And I'm not a great flyer under the best of circumstances, but I started freaking out. And I look at my mom and she's doing her crossword puzzle and you know, whatever.

And I was like, mom, mom, you know, look, I couldn't understand why she wasn't freaking out too. I was like, aren't you scared? I, you know, whatever. And she just looked at me and, you know, knowing her, she probably like laughed and, you know, toasted her screwdriver, her drink, not the tool. Yeah. I can't, even then you couldn't bring a screwdriver on the plane, but what said, darling, how would I in the world, would I be scared of something like, you know, some bumps on a plane after what I, but like she was.

[00:17:00] Unfreakoutable, unscarable after the death of her daughter. So yeah, it's like, bring on the German Shepherd or whatever, like, what do you got for me? But I love this idea. And I think this is why I resonated so much with your talk, with your TED talk. But this idea that, like, we still are hopeful people.

Because I think sometimes. People, particularly people who maybe have gone through really hard things and have not found joy again, will look at it and be like, they don't get it. And I feel like it is so core to who I am to be hopeful, to be even more committed to hope, more committed to joy than I was before, more deliberately committed.

And I love that I sense that in you as well. 

Morgan Motsinger: Yeah, that's been a really big question for me. Like, my little research brain has noodled with this for the last, you know, several years in particular, where I've wondered how much is a choice? How much is personality? How much is support? How, you [00:18:00] know, like, what are the factors in place that stimulate someone towards hopefulness?

Because I, I do think that there are many people who go through hard things, and they wonder, you know, if that's even possible for them. And they look at people like us and maybe think that we're, I don't know, like a little bit off our rockers or something like that because I'm so excited about joy, you know?

And so I just, I've wondered what the pieces are in place and I am in school right now. I'm a student and one class that I have this term is positive psychology and something clicked into place for me. When I read a couple of articles by I even have it printed out right here But by Martin Seligman who is like one of the key people in this positive psychology movement Because when I heard positive psychology before what that sounded like to me was how do we slap a happy face on hardship and I was like ex this sounds gross. This sounds like toxic positivity 

Like I don't like that at all what it actually is and I feel like I [00:19:00] seriously like feel like a puzzle piece has been clicked into place. Fill it up about this. What it is is actually like the scientific Approach to understanding human flourishing and well being so so many things in psychology are untestable only through when you have someone sitting in your office and you're saying, like, let's try these things and we see if they work out for these people, you know, but positive psychology is actually like, we're not looking just at treating mental illness, we're actually saying, like, how do we get people who, whether or not they have a mental illness into positive well being, um, How do we do that?

And so I'm, I feel very excited about understanding a little bit more of these dynamics of like what contributes to human flourishing, even though all of us will at some point have our bubbles popped. Have you gotten to the answer yet? Some of it, yes! Yes! Okay, I might actually have to bring up my notes because one of the things that was really helpful to me is [00:20:00] the way that they talk about positive psychology.

is that there are kind of four different ways to think about how you're doing in general. The classification system for positive psychology, number one, is high well being, low mental illness would be considered flourishing. High well being, high mental illness, struggling. Low well being, high mental illness, floundering.

Low well being, low mental illness, languishing. I think what I found so helpful about that is, I don't have any like clinical diagnoses for things like depression, anxiety, you know, any of, of the other like heavy hitters with borderline personality disorder, bipolar, anything like that. So I'm low in mental illness, but I also have gone through periods in my life where I have just had a real sense of low well being.

And that is exactly what it feels like. It feels like languishing. It feels like this sense of almost like despair or hopelessness, but also it's different than having [00:21:00] depression. So I just really appreciate this like, kind of like parsing out that there are two different things at play here. And that there are two different approaches to total holistic health and well being than just the mental illness piece or just the well being piece.

Jessica Fein: I wonder how, if we take the well being piece and say, okay, how do we impact that? And how much of that are we born with versus develop versus, you know, external factors contribute to? And I've wondered a lot about what are we born with in terms of resilience in particular versus what do we develop by circumstance.

And, you know, I am not in school and I am not reading Seligman and other things, but I am having fascinating conversations with people all the time. And I'm landing somewhere in the middle because you probably have heard about the happiness set point for people who might not know about it. To me, that's just so interesting that everybody kind of has their natural happiness set point.

And if you have a high happiness set point, really [00:22:00] shitty things can happen and you are going to emerge doing okay. And if you have a low happiness set point, you can like win the lottery and all these great things happen, but you're going to end up low, right? Now, I don't like that because it supposes that you kind of get what you get and you're, you know, you are where you are on that set point.

It's almost like weight, like you're going to always end up at your weight set point, no matter how much or how little you eat. But I do think that there is something that we are. born with. I really do believe that. And then I think it's also all the other factors. And for me again, like my parents were so resilient and they went through so, so much even before their daughter died.

I was never like studying them in like a, you know, weird way, but you know, they were my parents and I lived with them and watched and I think kind of absorbed the fact that they were absolutely devastated and in despair. And. continue to have full lives after they lost their daughter. So [00:23:00] I saw a model of how that can be done.

So when we think about some of this stuff and are we born with, do we develop? I think, I think it's a mixture. 

Morgan Motsinger: Yeah, a hundred percent. The question that I come back to then is like, it reminds me that it's super unhelpful to compare ourselves to anybody else, you know, like to compare how I'm feeling or how I'm doing with someone else who has experienced the same thing that I have, you know, so.

Social media obviously is like probably one of the worst things for this type of skill development to not compare yourself to somebody else's circumstances. Because like, for example, you could be someone who is actually feeling pretty okay about where you're at financially and you go on social media and you see someone else who has, you know, X amount of dollars and they're looking like their life is so great.

And you suddenly start questioning not just how much money you should have, but like your own sense of your own happiness. And so if we instead can become students of ourselves to say how I feel about X, Y, Z thing in my life, [00:24:00] I actually feel really good about or I actually really want this to change.

And there's not really any way to block out all the noise of other people who will contribute either on purpose or just by accident to the way that we view our own lives. But that has to be one of the most important things that we can do is become students of ourselves. Where we really drill down to what brings me a deep sense of joy and meaning and purpose.

What helps me feel most connected to other people and start to lean into those things. I think that's the answer. 

Jessica Fein: I love that, and I think that's also hard, right? I mean, it's so hard. I wish, like, I could just know. This is what brings me joy. And this is what I'm going to do. And you know, there are little snippets of it, but I have yet to be able to say the thing I've always wanted to be somebody who had like the thing, you know, a very clear prescription of, you know, do this, that, and the other thing, Jesse, and you will be full of joy.

I don't know. What have you as a student of [00:25:00] yourself discovered? 

Morgan Motsinger: I talked about this recently about this idea that we have of finding our purpose, our capital P purpose, because in my experience, There are very few people that know what they quote unquote want to do with their lives, you know, like there's kids who are like, I know for sure when I grow up I'm going to be a doctor or I'm going to be, you know, this type of artist or whatever.

I think that it really does us a disservice when we think about a singular purpose for our lives. I think more about it now in terms of purposes. 

Because the more that I grow and change and the more things that I experience, the more expansive my sense of how I'm going to contribute in the world and the people that I'm going to meet and the ways that I'm going to change.

And there's just this heavy weight of find it that falls away when I instead remind myself that it's not a singular thing for me to find. And that I can trust the joy that comes with whatever the thing is that I find that I enjoy doing. I think that's a [00:26:00] really difficult thing for people because we're taught that the things that come easy to us or the things that bring us a lot of joy, like, that's not good.

In a very, like, forward moving productivity optimization kind of culture that we live in, we are very distrustful of the things that feel really good. you know, because we're conditioned to think if I'm not working hard at it, then it's not as valuable. The more that we can kind of dispel the myth of the capital P purpose and also just pay attention to how things feel when we're doing them and trust that there's so much joy on the other side of that.

There's also this false belief that, like, if I just find the capital P purpose, I will be happy all the time. Like, that we would be somehow, like, that would inoculate us against, like, sadness or hard things happening, you know? 

Jessica Fein: Well, I also think that when we think about the capital P purpose, we tend to think that that's something that we're going to be paid for.

And when we think about purposes, That doesn't necessarily have to be what you are doing for your [00:27:00] income. You know what I mean? And I think it all does start when, you know, we say, what do you want to be when you grow up? What do you want to be? And I remember asking one of my kids that, my little guy, and he said, a human being.

Morgan Motsinger: that's the best answer I've ever heard. 

Jessica Fein: You know, I mean, I think he might not have understood the question, but that's not the point. It was a gorgeous answer. And so I do like that. And I do like the idea that, you know, we don't have to find this one thing because I will tell you, I do feel like my whole life I've been wondering what my quote unquote capital B or what my thing is.

You know what? It's so ridiculous. I mean, I've done a million things, you know, but I still am like, but what's that one thing? I don't know why there's something to me that feels so alluring about the possibility of having a thing. 

Morgan Motsinger: I wonder how much of it has to do with, you know, from like a biological neuroscience perspective, how much our brains love predictability.

This idea of, like, if I can figure out what my purpose is and I can give my brain a break from having to look for what the purpose is, [00:28:00] you know, and then I would just know what to do. The things would fall into place and I wouldn't have to worry so much about all this stuff. I, perhaps that might be one of the components to the question.

Jessica Fein: But if anybody should understand that the idea of predictability is a fantasy, it should be you, the two of us, right? I mean, talk about not having predictability. I guess again, it could be you emerge from that either feeling like, Hey, I don't need predictability. Look what I've done. Or it could be, Oh my God, after everything I've been through, I just want to be, have something predictable.

I know one of the things that I longed for for so many years wasn't predictability. It was boredom. I thought that would be the most luxurious thing I could imagine, being bored, because you know, as an intense medical caregiver for your child, which is living on the precipice 24 seven, which is 17 full time jobs, all wrapped in one and you know, um, P.S. We had other kids and I was working full time, etc. This idea of [00:29:00] like having a whole afternoon, for example, stretching in front of me with nothing I had to do seemed like that would be the most luxurious thing I could imagine. 

Morgan Motsinger: I wonder what the feeling that you would be attempting to capture in boredom.

Jessica Fein: Yes, and by the way, now, if I don't have a million things planned, it's uncomfortable for me. So that's now on the flip side of that, now that I am no longer a medical parent and I am no longer working full time. So it's interesting. But I think then it was just this feeling of constant busyness, constant awareness, again, hypervigilance.

At any moment, there were 18 different things. That I needed to do. Maybe the feeling would be, ah, things are okay because if things are okay, then I don't feel like there's a million things I have to be doing. Maybe that was the feeling and that wasn't going to happen. 

Morgan Motsinger: Yeah, I think it's a really good thing for people to think through about something that they want more of in their life [00:30:00] to drill down into what's the feeling that I'm seeking in that because I think what happens a lot of time is like, we have this idea of the thing that we want to accomplish and then we accomplish it and we're like, Oh, Like, that wasn't either as long lasting of a good feeling, or it didn't end up feeling the way that I thought it was going to.

And so, to like, ask the question of like, what's perhaps the thing that I'm pinning this hope of the experience on? How could I actually factor that into my day now? That might be one of the keys to a joy filled, resilient life. 

Jessica Fein: I think we just cracked it. Okay, we're done. No, but I love that. The other night I had a stomachache, I asked my husband, I was like, you gotta go get me ginger ale.

So he comes home with ginger ale and two lottery tickets. Okay. We don't usually buy lottery tickets. That's not part of our thing. But there he was at the checkout. And it was at like 255 million or whatever, I don't even know. So he buys the lottery tickets. Spoiler alert, we did not win. But we had this most fun over dinner that [00:31:00] night, really drilling down into what we would do when we, you know, found out we won the next day.

Because I got to tell you, I was pretty sure we would win. I felt like it was going to be our karmic like payback. So we were going through what we were going to do. And then My husband, my wise husband said, all right, what of these things could we do in some way, if we don't win the lottery? And that was really a great exercise to realize, okay, maybe we're not buying a house in Kauai, but could we rent a house for two weeks?

You know what I mean? It started giving us this idea, and that's reminding me of what you're saying, which is, what is the feeling we're going for with these things? And how can we think about, as non lottery winners, how could we make some of that same feeling? And you know what? Most of the things on the list, most.

There was some way to mudge it such that we could do it even if we were not 200 million winners. 

Morgan Motsinger: That's a great exercise. And that's, I mean, really what I thought [00:32:00] was, perhaps that's one of our purposes. is to find ways to inject those experiences into our lives. Like, what if, talking about this from more like a meta perspective, like, the purpose of being human.

You know, I have a, perhaps a tumultuous relationship with religion, partly because of everything that I've gone through with Annie. That was one of the worldviews that got completely blown open, was my perspective on why things happen and who's in charge got completely obliterated. And on this side of investigation, and I wouldn't even say like piecing things back together, it's not even that.

It's more just like an openness to many different ways of experiencing the unknown and the mystery of it all. Sometimes I think, is one of the purposes of being human to feel? Animals sense things, and they move by instinct, and humans make sense. So we Move, yes, by intuition, but also by the stories that we tell ourselves [00:33:00] and we tell each other to make sense of our experiences.

And so what if part of the purpose of being human is to feel all the things? The highs and the lows and if we are living in existence that we don't either don't know how or don't feel like we have permission to have moments of deep joy and Satisfaction in our lives that we're we're missing out on part of what it means to be human

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Jessica Fein: I think a lot of people going through what we went through would not give themselves permission to have deep joy.

Oh yeah. We should definitely talk about this. We should definitely talk about this, but I also want to say, then we also need to be able to give ourselves permission to feel. the uncomfortable stuff to the sadness, the fear, the anxiety, all that kind of stuff, and not have the goal always be cheer up Charlie, right?

Yes. It's not always to get us out of that. Sometimes it's to respect it. And I think that we so many of us are more inclined to try to, for ourselves and for the people we love, pull them out of those feelings that don't seem, you know, objectively positive. 

Morgan Motsinger: Yeah. I agree with that 100%. The urge to, as quickly as possible, get out of the discomfort, that's been one of the big lessons because in my experience, and many people have experienced this as well, is the more that we neglect or ignore or stuff down [00:35:00] the uncomfortable emotions, I'm not even going to call them negative emotions, but the real uncomfortable ones, it will spill out.

At the most inopportune times and the ways that you, yes, like I thought I was dealing with this. Well, you weren't and so like a big part of what has felt like how to still be in my life is learning how to be with myself. In a very kind and compassionate and patient way when I'm really down in those deep, dark feelings.

Jessica Fein: But let's get back to this other side of it, which is how so many people would think or would feel that it wasn't “appropriate.” 

And I have appropriate, like, in quotes and eye towels and all the things to experience joy when we were going through the worst, most horrific reality. And I think it was even more important.

It wasn't just that it was allowed, but it was so much more important to be able to have that [00:36:00] true joy. 

Morgan Motsinger: Yeah, I was sharing with a friend that sometimes I feel guilty about how well I'm doing. You know, like that I will sometimes hide my joy, partly because I don't want to be insensitive to other people who have gone through what I've gone through and are not doing okay.

But that is a really weird thing to feel ashamed of the joy, kind of. 

Jessica Fein: Well, it's interesting. I mean, I think that we. We are really skilled at making ourselves feel guilty for a whole host of things. We're not sad enough, we feel guilty. We are too sad, we feel guilty. We're not grieving right, that's again in quotes, we feel guilty.

We're not making meaning out of our grief, we feel guilty. We are really, really good at twisting ourselves in knots over this stuff. 

Morgan Motsinger: Is that something that you've struggled with as far as, like, the joy piece?

Jessica Fein: You mentioned before, you know, toxic positivity. I think of it as Pollyanna. And for [00:37:00] me, I feel like being able to find, create, feel joy alongside All the sorrow is my way of integrating who my daughter was.

So I feel a little bit proud because I feel like I watched her do this, and I'm proud that I get to have learned this from her. And again, that too could sound Pollyanna and maybe it's revisionist history, but the way I look at it is as horrible as what we were privy to was, it was that much more so, I will only speak for my, in my situation, it was that much more so for Dahlia.

I was witness to it. I was, you know, prior caregiver, all that kind of stuff. She was going through it. She was losing slowly, incrementally over the period of a dozen years, everything. And she smiled and laughed as long as she could move her facial muscles. [00:38:00] She wanted to do things. She wanted to go out. She wanted to play.

She wanted to be a kid. And so she was making that joy. So then if I, in the midst of Such sadness and despair can try to do that same thing, then I feel like, geez, that's honoring her. So I feel proud of it. 

Morgan Motsinger: That's a really beautiful way to, like you said, to integrate her into your life on this side of the experience.

Jessica Fein: Can we talk about hope? Yeah. Because I think that, you know, joy is one thing, and I think hope is another that to me, and you alluded to this before a little bit too, which is, I think hope is the opposite of despair. Yeah. I feel like we stayed hopeful throughout Dahlia's life. What we hoped for changed.

But we kept the feeling of hope, and sometimes what we were hoping for was something very, very, very small that somebody else wouldn't even notice. I mean, I'm not saying that we were, you [00:39:00] know, we might have been wishing for a miracle, wishing for a cure, but I think that's different from hope. And I'm wondering about you and your relationship with hope, then and now,.

Morgan Motsinger: the way that I talked about hope in my TED talk anyway, was that the way that we think about hope usually is that we tie it to an expectation that things will improve. And what I was suggesting for people was that we, instead of focusing on external realities, changing that we instead redirect the hope to an inner possibility.

That there's always room for growth that there's always room for an expansion of our capability to feel all the things we feel there's always a possibility of connection with other people. I mean, maybe that's just a way of coping with a diagnosis like that, where, you know, when she was diagnosed, they were like, the research on this for a cure is in the dark ages, like you, they told us right out of the gate, you will not see the light of any of these, [00:40:00] you know, curing things on this side of things. And so I, in that context, I have a different relationship to hope to than a family with a sick child where there are treatment options available, you know, that's a different dynamic too. 

Jessica Fein: Right. 

Morgan Motsinger: I think the very early on, I didn't then cling to any hope for a cure or a miracle for her.

And the benefit to doing that, whether or not I chose that or that's just what happened, you know, like that's the mystery of the human brain and the psyche, but it made me look very realistically at the cards that I was dealt and to say, okay, I'm going to work with what I've got instead of fixating on what I hope to happen outside of this reality.

That's just right in front of me. And so I really started to pay attention to what things I actually had control over. And so for me, I shifted this hope from how could I fix this to what have we got to work with? And I then started to just view Annie's life through the [00:41:00] perspective of how do I increase the possibility of joy for her?

That regardless of her skill level, what she's able to do, could I still find something every day that made her be happy that she was here, that she's happy to be in her life. And then on top of that, ways that I could help her be connected to other people. And so that influenced how I went into an IEP meeting.

That influenced how I was talking to the palliative care team. that influenced how we talked about end of life interventions. It influenced all of our decisions. Even, like, with COVID, that was a really difficult few years to go through because of the worry of her. Because the reality was that in the first few weeks after her diagnosis, when she was three and I was asking the doctor, the geneticist, like, what do these kids usually die from?

And they said, respiratory illness, respiratory failure. And then COVID comes and it's a respiratory illness, like, it's terrifying, [00:42:00] terrifying. And so it was like, you know, how, how, even in the midst of COVID, how do I still hang on to these goals that I have for her life of joy and connection? That was a very long winded answer to that question.

Jessica Fein: No, I love it and I relate to it and also I love the way you put it. It's so beautiful and I feel very aligned with what you're saying all the way through to COVID when all of a sudden, you know, ventilators and respiratory illnesses and everything was like, you know, headlines in the news and I was like, welcome to our world.

That's what we had been living. But I think that that is such an interesting way to put it in terms of pinning hope on things that are external, which really then do become wishes, things that you have nothing to do with versus those things that are within. What is your relationship like to hope? I want to have things that I am hoping for that can be achieved because that is what gives us the strength to keep hoping.

So if I'm going to hope for something that is totally outside of my sphere of influence, And that may or may not [00:43:00] happen. You know, I'm going to hope that I win the lottery. Okay, I'm not going to win this. That's a wish. That's a fantasy. That's fun. Right? But if I can hope that, gee, Morgan and I are going to have a conversation.

I hope we have a great conversation. And then we make it so. Right? And then I'm hoping that whatever the things are, and as it pertains to caregiving, it's just as you say it was. How can we continue to give Dahlia and our other kids as meaningful childhood as possible in the face of all of these horrific things, right?

And so the more that we could do that, the more emboldened we felt to continue hoping. 

Morgan Motsinger: I think one of the secret hopes that accompanied a big fear for me before Annie died was, I hope I'm going to be okay. I was really worried about that. I was really worried that I was going to completely fall apart, that I was going to not recognize myself, that I was going to become a shell of the person that I was, I was really afraid of that.

And the hope that, like, I'm [00:44:00] gonna be okay is tricky because there's no way to really see if that's possible or not. But what it did do was exactly what you're talking about. It made me take action. It made me start to look at what are the ways that I can increase my chances that I'll be okay on the other side of this.

And two really important components to that, that I think will be very helpful to people who are listening to this. One is that because I had the benefit slash curse of knowing that she would likely die in her mid teens, I found something that would continue after she died. So I started to become involved in activities that could still continue after she died.

Like, I didn't have my entire world be her and her care. because what would happen when that wasn't necessary anymore? I mean, a big chunk of my adult life, my life orbited around Annie, planet Annie. And then when that planet wasn't there anymore, I was like, boo, like off into space, like untethered. Like, what am I doing with [00:45:00] my day and my life?

Jessica Fein: Logistically, spiritually, psychologically, physically, emotionally, everything revolves around Annie and Dalia. 

Morgan Motsinger: Yes. And then boom. In an instant, it's gone. Yeah. And so, what was really helpful and practical was finding something that would connect me to myself, I guess, on the other side of that. 

Jessica Fein: For me, I kept working in my job that I had had before Dalia was even born.

I kept working in that job all the way through and what I say to that point is it was allowing me to remember not only who I was before, but also to remember who I would be after. 

And what's the second thing that you were going to say that really helped? 

Morgan Motsinger: First, I'll say that I think a lot of people go through this when they become empty nesters.

You know parents who have really committed to being the best most hands on most very present parent that they can be and then when the Kids don't need them anymore. They're like, what is happening? Yeah, so this is practical advice for everyone find something That's just for you that you enjoy and and the second piece [00:46:00] of that is like really defining for myself What self care is because I know that like self care can sound kind of icky and like, selfish or like, yeah, it's a bubble bath or it's a shopping trip or whatever.

No, no, no. Like I'm talking about like deep, meaningful self care where you're really developing habits and things that make you feel connected to yourself that make you feel connected to your body that make you feel connected to your spirit that make you feel connected to meaning. So finding those things and carving out time to make those a priority.

Are two just really practical ways to get through something where you increase your odds of being okay on the other side of them. 

Jessica Fein: Can you share with us what one of those things was for you when you think about your self care? 

Morgan Motsinger: Meditation for sure. I have a very busy mind and a very chatty internal dialogue the thoughts are always there and they're always coming and Meditation [00:47:00] became the practice of not just observing my thoughts but observing the body's sensations and catching Myself in the gap between the stimulus and response, so it has helped me be a more patient person with my kids, it has helped me pay attention to when I'm like just on the brink of being overstimulated and behaving in a way that maybe isn't great.

You know, it's, it's just a way to, like, increase that gap between whatever's happening and my response to it or the story that I tell myself about it. So meditation for me, hands down, it's been the best self care practice for sure. Do you have one that aligns and is easy for you to participate in? 

Jessica Fein: When I think, and this is interesting because I guess it goes maybe back to this idea of like, ah, to be bored.

And I use that word, you know, kind of a tongue in cheek because I'm not really ever bored. But for me, curling up with a good book, that's how I quiet my mind or get my mind out of its own patterns and into some other kind of just totally absorbing [00:48:00] story. I'm a voracious reader and I think that that is something that is a great both escape and way of taking care.

Morgan Motsinger: Yeah, I think that's a great one. Will you tell, I know the people who listen to your podcast already know this, but the people who listen to mine, will you tell us about your book?

Jessica Fein: Thank you for asking. So my book is called Breath Taking: a memoir of family dreams and broken genes. And it is the story of how my husband and I built our family in the first place, which was long and circuitous and talk about an unexpected journey.

That was definitely how we made our family, adopting three children from Guatemala. And then it's really the story of Raising Dalia. It is not a book about Dahlia's death, it's very much a book about Dalia’s life, and a book about how I, as it's my memoir, went from thinking that I had control, thinking that I knew what life was going to look like, Thinking that one could only experience one kind of thing at a time, how I learned that all those things aren't true and [00:49:00] that joy and sorrow can hold hands and dance together and how I learned that there are ways to create beauty and meaning and joy, even in the midst of really horrendous situations and also to share my gorgeous daughter with the world.

So wherever people get their books, you can get Breath Taking. 

Tell us about your podcast.

Morgan Motsinger: My podcast, “P. S. We Expire,” is about conversations that help us navigate being human. And also, I try and take an approach to it that none of the topics are off limits. You know, like, I know we started this podcast out by saying something that might be potentially very offensive or insensitive by saying we have dead kids.

You know, like, these are all things that people want to talk about, and we do. Either don't have the environment or we ourselves are afraid to take a peek at these areas of our lives that feel scary to go into alone. One of the classes that I really wanted to take this term was a seminar on death on dying.

It [00:50:00] filled up in 15 minutes. which the, the professor told me she's been teaching that class for 13 years. And every semester she thinks, are people going to want to take this? And it fills up so fast, which tells me that people want to be having these types of conversations and we're not for some reason or another.

So the goal of my podcast, I'm not just talking about death. So don't worry about that. But really, like, can we just stop with, like, all of the feelings of, like, oh, I shouldn't be talking about this or there's a certain way to talk about it or whatever and, like, let's just talk. Let's just get into it. So that's the podcast.

What I wanted to ask you about is, how do you respond when people say that to you? “I don't know how you do it.” 

Jessica Fein: That's why, I mean, I wrote an article about this years ago. I mean, I think it may have even been when Talia was newly diagnosed or maybe even before her diagnosis when it was just like, you know, busy working mom of three and blah, blah, blah, and whatever.

And every day people would say, I don't know how you do it. And so it really is the name of the podcast is tongue in cheek because there is no great way to respond to that. And [00:51:00] nor is anybody really looking for a meaningful response. Nobody wants me to say, like, well, pull up a chair and let me tell you exactly how I do it, right?

Morgan Motsinger: Let me pull out my calendar and show you all the appointments we have. 

Jessica Fein: Exactly. And any way you answer it, you know, oh, you know, what choice do I have? Or, oh, you do it too. Or it's not so bad. Or it's worse than you think. Or whatever. Like, there's no way to respond to a statement like that. And we know people are trying to acknowledge that what we're going through is big.

And, you know, they say it out of respect. But it is one of those many, many, many things. People say that doesn't really have an ample response, which is why I then said, okay, let's get into some conversations and find out how people do do the things that look so undoable. 

Morgan Motsinger: What are some of the recurring themes or I wouldn't even say like practical pieces of advice, but like, what are some of the recurring things that you see from the conversation?

Jessica Fein: Oh, it's things we've talked about. I'll give you three off the top of my head. I'll give you four off the top of my head. Number one is community. That's number one, two, and three, probably. Everybody talks about that, whether that's people I've known my whole life, or the people I've met who are going through what I'm going through, or the people who are three steps ahead of me and I've [00:52:00] been able to learn from them, or whatever it is, community.

That's number one. Number two, the rest aren't in any particular order. Having something that is very much their identity, so that whatever the thing is that others look at and say, I don't know how you do it, they have this other thing that is core to who they are. So what we were talking about just a moment ago about maintaining some piece of your identity, that is you.

Number three is spirituality. And that can look a lot of different ways that might look like organized religion that might look like meditation or yoga practice, right? So that is definitely has a lot of variety to it. And then number four is a combination of what we were talking about with self care and also having some logistics.

in place some more practical tools that help with whatever the thing is that we're talking about. That can take a variety of forms depending on what that particular conversation is, but it has been one of my goals to elevate what are those themes that cross over all of these different individual stories.

Morgan Motsinger: I love [00:53:00] that so much because it really does highlight the fact that all of us really are going through this life with the same limitations, I suppose, on future planning or these bodies that we have to wear that have limitations to them that get tired that you need to take naps or eat good food or whatever, you know, I think that one of the biggest takeaways from my experience with Annie is that she broke down so many barriers to connections with all different types of people.

You know, like she literally didn't see or care about so many of those things. I love talking about when we would still take her out quite a bit and she was still walking and running around and eating food by mouth. We would be at a restaurant and the waiter would be walking by and she would just reach up and like grab something off of the plate.

She was just oblivious to that and was such a joyful, present little kid. And it really helped me. Look at so many of these things that we're like, this is how it is and made me ask like, well, is it like, or did we just all [00:54:00] decide that that's how it was supposed to be, but it's not actually like that. Not that I would do things like that and, but it, it really helps me connect with people in a way where I'm like, all of these labels that we've placed on things, like we all made those up.

And so there's always an opportunity to be like, hey, I'm still just looking into the eyes of another human. who's still going through these things, who still needs community, who still needs something for them that's important and meaningful to them, that still needs spirituality, that still needs practical tools.

I'm still in this space with you as a human. 

Jessica Fein: I love that. Thank you so much, Morgan. 

Here are my takeaways from the conversation with Morgan. 

Number one, rather than searching for a single capital P purpose, consider that you may have multiple purposes. Trust the joy that comes with whatever brings you meaning, and remember, not all purposes come with a paycheck.

Number two, there's great power in redirecting your hope from external changes to internal possibilities. Focus on what you can control, your growth, your connections with others, and [00:55:00] your capacity to find meaning in each day. 

Number three, give yourself permission to feel joy even in the darkest times. Joy is not a betrayal of your struggles. 

Number four. Grief is not a competition. Remember that your response to loss or hardship doesn't need to match anybody else's. 

Number five. Develop meaningful self care practices that help you stay connected to yourself. It's not about bubble baths or shopping trips. It's about finding things that ground you and help you remain present. 

Number six. Maintain aspects of your identity beyond your immediate circumstances. Whether you're a caregiver, somebody experiencing loss or facing other challenges, having something that's just yours can help you remember who you are and who you might become.

And number seven, build and nurture your community. People who understand your experience, whether they're long time friends or others who have walked a similar path, can be game changers in terms of support, understanding, and hope. Thank you so much for listening to today's double interview. I hope you enjoyed the episode.

I'd be grateful if you could just take a second to rate, review, [00:56:00] and follow the show. If you want to learn more about my TED talk and Morgan's TED talk, you can find them in the show notes, or you can just hop on YouTube and search them up. Have a great day. Talk to you next time.