Speaker 1: Pushkin.
Speaker 2: There was a lot of time where I was like,
Speaker 2: I feel like I'm hanging onto a flagpole, and the
Speaker 2: flagpole is my old life, and I'm saying, this isn't
Speaker 2: my life. This current life I'm living in is wrong,
Speaker 2: This is not how it should be. THEO is supposed
Speaker 2: to be alive.
Speaker 1: In twenty twenty three, Ali Kramer received a phone call
Speaker 1: that changed her life. On the other end of the line,
Speaker 1: a doctor told her that her three year old son, Theo,
Speaker 1: had terminal brain cancer. In the months and years that
Speaker 1: followed Theo's diagnosis, Ali kept a steel grip on her
Speaker 1: old life until she had a realization.
Speaker 2: That life doesn't exist anymore, and you're in holding on
Speaker 2: to a flagpole in the wind. You have to let
Speaker 2: go and let the wind carry you into your new life.
Speaker 1: On today's episode, when Grief dissolves one identity and creates another,
Speaker 1: I'm Maya Shunker, a scientist who studies human behavior. And
Speaker 1: this is a slight change of plans, a show about
Speaker 1: who we are and who we become in the face
Speaker 1: of a big change. I met Ali backstage at a
Speaker 1: live event a few months ago. It was a chaotic scene,
Speaker 1: but the minute Ali and I started talking. I was
Speaker 1: fully locked in. Ali is one of those people with
Speaker 1: whom you find yourself immediately at ease. She is joyful
Speaker 1: and present and as curious about you as she is
Speaker 1: open about the most painful thing that's happened to her,
Speaker 1: the loss of her son, THEO. Within moments of hearing
Speaker 1: her story, I knew you had to hear it too.
Speaker 1: When Ali and I sat down for this conversation, it
Speaker 1: had been two and a half years since THEO died.
Speaker 1: We started off by talking about how he lived.
Speaker 2: Oh God, THEO was. He was so vivacious. He was
Speaker 2: really magnetic. He was like sunshine. He had this curly,
Speaker 2: dirty blonde hair and these huge brown eyes, and he
Speaker 2: was just always on the move. He was always moving,
Speaker 2: he was always talking. He was really loud. He was
Speaker 2: a very tiny kid, but he was really big, Like
Speaker 2: his personality was really big. His energy was big. There's
Speaker 2: that like extremely cliche saying that dance like no one's watching,
Speaker 2: sing as if no one can hear you, And that
Speaker 2: was how he lived. I remember right before his third birthday,
Speaker 2: he was dancing so crazily on the lawn at the
Speaker 2: Americana in Glendale. Huge public space, so many people there,
Speaker 2: and it was as if he was totally unaware that
Speaker 2: there was anyone else there. And he was laughing and giggling,
Speaker 2: and I remember thinking, I've never seen a person so free.
Speaker 2: There was no self consciousness, and that is really inspiring.
Speaker 2: Everywhere we went, people noticed him in a way that
Speaker 2: was kind of crazy.
Speaker 1: Like he drew strangers to him. People were like, whoa,
Speaker 1: there's a light in this kid.
Speaker 2: Yes, exactly. And I was aware of that. And I
Speaker 2: think as a parent, you know, you're not allowed to
Speaker 2: say out loud that you think your child is super special,
Speaker 2: but I think he was super special. Yeah. I loved
Speaker 2: talking to him. I loved seeing what he was thinking about.
Speaker 2: You know, any parent, I think, can relate to that
Speaker 2: when your kids starts talking and you really find out
Speaker 2: what's on their mind and how their mind works. Every
Speaker 2: day that passed by another chance to see who he
Speaker 2: was becoming.
Speaker 1: Is there a memory of something really quirky or funny
Speaker 1: or insightful when you would probe his inner mine?
Speaker 2: Yes. We were once sitting on our front porch and
Speaker 2: there was some wind and he said, look, Mom, the
Speaker 2: grass is dancing. And I said, what do you think
Speaker 2: it's dancing to And he said, I think the grass
Speaker 2: is dancing to the music of the wind. Oh my gosh,
Speaker 2: and I am right. And I immediately took out my
Speaker 2: phone because I was like, I got to write this
Speaker 2: down in my notes, app what the hell is this
Speaker 2: kid actually eighty five years old?
Speaker 1: I mean, it was just so wild and also clearly
Speaker 1: a son of two artists.
Speaker 2: I guess.
Speaker 1: So how old was THEO when you first started to
Speaker 1: notice that something was off?
Speaker 2: He was three years old and three months and it
Speaker 2: was the last week of January that I noticed that
Speaker 2: his balance was a little bit off, And it was
Speaker 2: so slight that I was the only one that noticed it.
Speaker 2: He wasn't falling, but he was tripping a tiny bit more.
Speaker 2: And I remember I did have the thought, is his
Speaker 2: voice a little bit slower? He had been sick from
Speaker 2: preschool a lot, and so you know, when your kid
Speaker 2: is sick, maybe they're talking a little bit slower like this,
Speaker 2: And I remember having thought, is he I don't know?
Speaker 2: What is he usually like? You know, it's that sense
Speaker 2: of like is the milk bad? I can't tell, because
Speaker 2: what does milk usually smell like? Mike, my husband didn't
Speaker 2: notice it. His teachers at school didn't notice it, and
Speaker 2: so I felt like maybe I was going crazy. Mike
Speaker 2: was sure that it was growing pains. He said, I'm
Speaker 2: sure it's just a growth spurt, but it seemed a
Speaker 2: little bit off to me. THEO was also really, really
Speaker 2: anxious in a way that he hadn't been before. And
Speaker 2: I remember we were at a party at a friend
Speaker 2: of his house and they had a play structure and
Speaker 2: THEO was to climb to the top of the play
Speaker 2: structure and he hadn't been before, and I remember thinking, Oh,
Speaker 2: that's weird. He's really anxious. And it's only until all
Speaker 2: of these things start to really build that my mind
Speaker 2: started connecting them.
Speaker 1: Yes, because in isolation, any one of these things would
Speaker 1: maybe have not set off the alarm bells. But then
Speaker 1: when you start to aggregate them, you're like, oh, whoa wait,
Speaker 1: something might really be wrong. Is that right, okay?
Speaker 2: And then it wasn't until January thirty. First. I remember
Speaker 2: I was taking him to school in the morning and
Speaker 2: I said, let's run to the car. I wanted to
Speaker 2: see if he could run, and his gait was really off,
Speaker 2: and I thought, oh, man, I don't like this. And
Speaker 2: when he got home from school, he was super tired.
Speaker 2: He took a really long nap and when he woke
Speaker 2: up he was super disoriented, and that was the first
Speaker 2: time his words were slurred. And then I called the
Speaker 2: doctor and I said, hey, I want to run something
Speaker 2: by you. He is swerving and falling. At that point,
Speaker 2: he actually was falling down, and they said take him
Speaker 2: to the er. I remember Mike and I drove separately
Speaker 2: because we had a five month old at the time,
Speaker 2: my daughter, Remy, and I did not know what I expected.
Speaker 2: But when we got there, he was actually acting fine,
Speaker 2: and the er doctor did not seem concerned, and I
Speaker 2: truly thought they all thought I was crazy. I was like, no,
Speaker 2: I promise, he really was slurring his words, and I
Speaker 2: remember them saying we could do a CT scan, but
Speaker 2: it's a lot of radiation for a toddler, and I
Speaker 2: don't know if it warrants it. And so then at
Speaker 2: some point I went home to relieve our babysitter with
Speaker 2: my daughter and Mike stayed at the hospital with THEO
Speaker 2: and they did a CT and even then Mike and
Speaker 2: I were kind of fighting about it. He was really annoyed, honestly,
Speaker 2: with my anxiety about theo's health. He was texting being like, see,
Speaker 2: this is why I didn't think we should come to
Speaker 2: the hospital. It's going to set off this chain of
Speaker 2: events and they're going to do all these interventions that
Speaker 2: we don't need. We should have just waited till tomorrow.
Speaker 2: And then Mike called me in the evening and said
Speaker 2: they found something on his brain. My first reaction was
Speaker 2: what is it? What's on his brain? And he said,
Speaker 2: they don't know. There are three things that could be.
Speaker 2: It could be a brain tumor. That's the most serious
Speaker 2: thing and the least likely. It could be swelling from encephalitis,
Speaker 2: which is treatable. It's really a dangerous condition, but it's treatable.
Speaker 2: Or it could be, you know, some kind of inflammation
Speaker 2: from an autoimmune illness. Mike was at the doctor with him.
Speaker 2: They said they need to do an MRI to figure
Speaker 2: out what it is, and they don't have a pediatric
Speaker 2: anesthesiologist on staff at the hospital we were at, so
Speaker 2: we're going to transfer him to a different hospital. And
Speaker 2: as I'm just at home feeling like totally powerless, saying
Speaker 2: text me, you know, call me with any updates, I
Speaker 2: get a call from the pediatrician at theo's doctor's office.
Speaker 2: It was this on call pediatrician. I remember exactly where
Speaker 2: I was standing, and I said, Hey, what's going on?
Speaker 2: And she said, it's most likely a brain tumor. That
Speaker 2: was a moment where everything changed. It was like all
Speaker 2: the air left the room. I said, excuse me, and
Speaker 2: she said it in the exact same phrasing, it's most
Speaker 2: likely a brain tumor. And I said, Mike said it
Speaker 2: could be encephalitis. Mike said, it could be swelling. Is
Speaker 2: that possible too, and she said, yeah, it's possible. They
Speaker 2: don't look identical on the scan. Yeah, I guess it's possible.
Speaker 2: Let's wait to find out. But once you hear that,
Speaker 2: Once I heard.
Speaker 1: That brain cancer, you can't unhear that.
Speaker 2: Yeah, brain cancer. Yeah, and my mind immediately went to
Speaker 2: he's going to die, even though I didn't know what
Speaker 2: kind of brain cancer it was. I think I had
Speaker 2: to go to the worst case scenario because for me,
Speaker 2: I think if I can get to the worst case
Speaker 2: scenario and get ahead of it in my head, then
Speaker 2: anything else is manageable.
Speaker 1: Yeah, it's like trying to prepare, even though the preparedness
Speaker 1: is potentially an illusion. I really resonate with that.
Speaker 2: Yes, it was like this deep knowing or maybe just
Speaker 2: my anxiety. But just a person doesn't survive brain cancer
Speaker 2: was my thought. A three year old doesn't survive brain cancer?
Speaker 2: And how is this happening? How is this real? The
Speaker 2: hours that followed were so dark, true, like a dark
Speaker 2: night of the soul. I couldn't sleep. I was at
Speaker 2: home while Mike was at the hospital getting transferred to
Speaker 2: a different hospital with THEO in an ambulance. And then
Speaker 2: the next day I went to the hospital and it
Speaker 2: was like a nightmare in slow motion. I got there.
Speaker 2: THEO couldn't walk, he was slurring, his eyes were sort
Speaker 2: of they just had lost a lot of light, and
Speaker 2: so we were just waiting and I felt like, why
Speaker 2: is there no urgency? I remember thinking I'm trapped in
Speaker 2: a nightmare. It took a really, really long time, and
Speaker 2: I remember peeking in the room and seeing the doctor
Speaker 2: that was reading it taking a screenshot on his phone
Speaker 2: and like texting someone, and I remember thinking he's getting
Speaker 2: a second opinion and it's really bad. And then he
Speaker 2: had the MRI and the doctor was about to go
Speaker 2: home and he said, I'll like, you'll you'll find out
Speaker 2: tomorrow and we said no, no, you need to tell
Speaker 2: us right now. Yeah, and oof, this part is hard
Speaker 2: to tell. And he said, THEO has a tumor in
Speaker 2: the ponds of his brain, which is the brain stem,
Speaker 2: so it's inoperable. It can't be removed surgically, and it's
Speaker 2: very hard for medication to reach this part of the
Speaker 2: brain and eradicate the cancer. So there really is not
Speaker 2: a chemo option that has been effective. There are parents
Speaker 2: that do clinical trials to try to extend their child's life,
Speaker 2: but there are no survivors of this kind of cancer,
Speaker 2: and your son probably has four to nine months to live.
Speaker 2: I think people might think that a parent finding out
Speaker 2: their child is going to die this loud moment where
Speaker 2: they fall on the floor screaming, and certainly I'm sure
Speaker 2: that many parents react that way. It's not how I reacted.
Speaker 2: I was very calm. I was very numb because I
Speaker 2: had been going through this scenario in my head for
Speaker 2: twenty four hours. Interestingly, the first thing I said to
Speaker 2: Mike was we're going to lose him, aren't we And
Speaker 2: he said, yes, I think we are. And then I said,
Speaker 2: we're going to have to have another kid, aren't we,
Speaker 2: which is really strange that I would even be thinking
Speaker 2: about having another child. But I think it was my
Speaker 2: brain's way of saying, we are going to survive. There
Speaker 2: is an after right, and we are going to still
Speaker 2: be a family. Right. It was like me attempting to
Speaker 2: propel myself into the future to assure myself that I
Speaker 2: could still have the life that I thought I was
Speaker 2: going to have, which is crazy to say, because I
Speaker 2: did know in that moment I would never have the life. Yeah, yeah,
Speaker 2: I thought I would have.
Speaker 1: But you're just protecting. It's like a psychological immune response,
Speaker 1: you know, yes, yes, grasping for some semblance of security
Speaker 1: and comfort and stability in a world that's completely crashing down.
Speaker 2: I get that. Yeah. And then I went home and
Speaker 2: I remember sitting in the rocking chair with my daughter,
Speaker 2: nursing her, and just it felt so surreal, being like,
Speaker 2: my child is going to die, and Remy is going
Speaker 2: to be the oldest, and THEO is going to die.
Speaker 2: THEO is going to die, and he has cancer and
Speaker 2: he's going to die. At this point, I still hadn't
Speaker 2: really cried. This numbness was so strange, and like you said,
Speaker 2: it was protective, clearly, and it certainly didn't last for
Speaker 2: very long, But for that night, I had this like
Speaker 2: removed distance from it.
Speaker 1: Yeah, it sounds like classic shock, which I also suffer
Speaker 1: from in the face of really devastating news. It's like
Speaker 1: my nervous system takes time to catch up. For me,
Speaker 1: I feel like I'm very incapable of absorbing information quickly
Speaker 1: because it's just too devastating. Whereas some people can rapidly
Speaker 1: assimilate the new information, I've just never been one of
Speaker 1: those people. Sounds like maybe you struggle with that too.
Speaker 2: I do, and I've never heard it put that way,
Speaker 2: And that's really helpful. Yes, I think that's right.
Speaker 1: You're told that THEO has untreatable cancer. Bring me back
Speaker 1: to the moment you saw him for the first time
Speaker 1: in the hospital after receiving that news.
Speaker 2: What was that like? What was he like? He was asleep,
Speaker 2: he had been under general anesthesia for the MRI, and
Speaker 2: he looked so tiny in that bed. He looked so
Speaker 2: beautiful and fragile, and there was this knowledge that I
Speaker 2: couldn't protect him, and he looked so in need of protection,
Speaker 2: and protecting him and caring for him had been my
Speaker 2: primary mode of being for almost three and a half years,
Speaker 2: actually more since I was pregnant with him, and all
Speaker 2: of a sudden, this little vulnerable kid is lost my
Speaker 2: grasp on being able to protect him. Seeing him decline
Speaker 2: was like a horror movie. I felt very, very desperate
Speaker 2: for the nurses and doctors to know what he looked
Speaker 2: like before, how vibrant he was.
Speaker 1: Why was that important to you, Oh God, Maya, it
Speaker 1: was so important to me.
Speaker 2: I You fight to care for the people you love,
Speaker 2: and I felt like if they would, if they loved him,
Speaker 2: they would really fight for him for his quality of life.
Speaker 2: And to know him is to love him, so they
Speaker 2: had to know him. You have to know him. We
Speaker 2: had pictures all over the room of him, because this
Speaker 2: kid that you know, he pretty quickly on. He had
Speaker 2: a feeding tube, and he had a pick line, and
Speaker 2: he had just covered in wires. Yeah, and he was
Speaker 2: sleeping and he was he wasn't speaking in and this
Speaker 2: kid lying there was just a medical patient to them,
Speaker 2: and I was in my head I just wanted to scream,
Speaker 2: this isn't just a medical patient. This is THEO. And
Speaker 2: THEO loves to run and THEO loves to dance, and
Speaker 2: THEO these are all the things that you need to
Speaker 2: know about him. I was desperate to show them videos
Speaker 2: of him. I think probably because I was desperate to
Speaker 2: see those videos as well. God. I had such a
Speaker 2: habit in that first month of watching videos of him
Speaker 2: from the before times because I missed him so much.
Speaker 2: It was like where did he go? And I wanted
Speaker 2: everyone who encountered him to know that that was the
Speaker 2: real him. This is not the real him. In hindsight,
Speaker 2: I don't love that line of thinking, because that was
Speaker 2: the real him. But I think I really bristled against
Speaker 2: this new reality. I was really fighting it. It was like, no,
Speaker 2: this is him, and gosh. I remember, even outside of
Speaker 2: the hospital, walking around the neighborhood, going from someone that
Speaker 2: people used to look at my son and you couldn't
Speaker 2: help but smile when you saw him, to someone really pitied,
Speaker 2: you know, walking him around town in his wheelchair with
Speaker 2: his bag of formula going through his feeding tube that
Speaker 2: at that point was visible, it was through his nose.
Speaker 2: Everyone stared at us and felt sorry for us and
Speaker 2: felt curious. It was so surreal, going from a life
Speaker 2: that others maybe envied, a life that I really cherished
Speaker 2: to a life that people pitied and a life that
Speaker 2: I hated. I would say I hate my life. I
Speaker 2: used to love my life, but when THEO got sick,
Speaker 2: I was like, I hate my life. So I think
Speaker 2: that's where the piece of like see him and see.
Speaker 1: Us yes makes so much sense. How do you parent
Speaker 1: a child who's dying? What does that shift look like?
Speaker 2: It felt impossible, It was so hard. There are so
Speaker 2: many things about parenthood that are oriented towards the future.
Speaker 2: Every message you get as a parent is about your
Speaker 2: child growing up, and the future. Orientation is something that
Speaker 2: I don't think we as parents even realize is so
Speaker 2: integral to the role. Exactly.
Speaker 1: You teach lessons, you impart wisdom, You withhold pleasures so
Speaker 1: they can understand how to build grit and patience and
Speaker 1: all these other character traits.
Speaker 2: That's exactly it. You're constantly thinking, is this going to
Speaker 2: instill good habits in them? What are they eating? What
Speaker 2: are they consuming? What kind of are they watching too
Speaker 2: much TV? Are they socializing enough? And all of a sudden,
Speaker 2: all of it just stops because we don't know if
Speaker 2: there are future moments. It started to just be like,
Speaker 2: what will bring him pleasure? In this moment. Yes, and
Speaker 2: we've actually been told there are not future moments ef it.
Speaker 2: It doesn't matter if he's a little bit spoiled. Let's
Speaker 2: take him to the toy store. Yes, okay, he's watching
Speaker 2: ten hours of TV a day. It's the only thing
Speaker 2: that makes him happy right now. To live in the
Speaker 2: world knowing your child is going to die, it's just
Speaker 2: so not the way we are built to live. Absolutely,
Speaker 2: it was exceedingly strange. It also, yeah, it put the
Speaker 2: emphasis so on the present moment. It's hard not to
Speaker 2: have everything feel so big. Hm. Say more, well, the
Speaker 2: good moments, even those were just a thousand pounds hm.
Speaker 2: I felt so hungry for him. It was like, memorize this,
Speaker 2: memorize his face, feel the curves of his ears. It's temporary,
Speaker 2: like grab it all of it, soak it in, soak
Speaker 2: it in. Mike and I used to look at each
Speaker 2: other and say, soak, soak, soak, soak, soak soak anytime
Speaker 2: something was good. So while while our friends and our
Speaker 2: family were so happy every time there were great moments,
Speaker 2: and so were we, they also felt impossible. Yeah, because
Speaker 2: it was like, ah, this is too precious, how much
Speaker 2: more of this? Do we have. Are things going to
Speaker 2: turn around tomorrow? Is his tumor going to start growing
Speaker 2: again tomorrow? Yeah?
Speaker 1: I'm trying to reflect on if you were to tell
Speaker 1: me I was going to lose one of my most
Speaker 1: cherished people, the task of soaking them in fully feels impossible.
Speaker 1: I don't even know what it would mean or look like.
Speaker 1: I mean, I would just stare at them and be like,
Speaker 1: can my brain be a camera right now? Can my
Speaker 1: fingertips remember the sensation of this?
Speaker 2: Like?
Speaker 1: It's such an overwhelming task to immortalize snapshots of our
Speaker 1: life in this way. It's it is. It is also
Speaker 1: not the way that we are programmed to live.
Speaker 2: You know.
Speaker 1: We are programmed in a way where moments are fleeting
Speaker 1: and we reflect on them, but we don't need to
Speaker 1: cement them.
Speaker 2: Yes, that's so hard. It feels elusive, you know it is.
Speaker 2: It felt impossible in the time, in the moment. And
Speaker 2: one thing I will say is looking back, sometimes I
Speaker 2: really have judgment towards myself for the space that I
Speaker 2: took while he was sick. I think most people, hearing
Speaker 2: that I knew my son was going to die would
Speaker 2: be like, well, you spent every second with him, didn't
Speaker 2: you and I couldn't. Yeah, I couldn't be around him
Speaker 2: twenty four hours a day because of the heaviness of
Speaker 2: all of this. I needed breaks. Self care was so
Speaker 2: minimal during that time. Mike and I both lost so
Speaker 2: much weight. Were felt like we were wasting away. We
Speaker 2: were so sleep deprived. We were so sleep deprived. We
Speaker 2: were giving him medicine around the clock through his feeding tube,
Speaker 2: and so I couldn't be around him all the time.
Speaker 2: And sometimes that's really painful to reflect on, like did
Speaker 2: I spend enough time with him? And then I have
Speaker 2: to remember that my survival felt like it depended on
Speaker 2: having some moments of distance.
Speaker 1: Yeah, And the quality of your interactions with him was
Speaker 1: of paramount importance. If he saw you in this intense
Speaker 1: state of despair and grief all the time because you
Speaker 1: weren't taking moments to break, was that of service to him?
Speaker 1: Almost certainly?
Speaker 2: Not right?
Speaker 1: And there was always going to be a trade off. Yep,
Speaker 1: we'll be back in a moment with a slight change
Speaker 1: of plans. As theo's cancer progressed, Ali and her husband
Speaker 1: Mike did their best to adjust to their new reality,
Speaker 1: but their differing responses to Theo's illness straining their marriage.
Speaker 2: In the beginning, we were very aligned. Neither of us
Speaker 2: had any information about DIPG. This is the kind of
Speaker 2: tumor that he had, so we were just going off
Speaker 2: what the doctor said, and we took it at face value.
Speaker 2: As the days went on, I continued to take that
Speaker 2: at face value, and Mike began to believe that it
Speaker 2: was possible to save Theo's life, And just that difference
Speaker 2: in what we thought was possible it changed everything about
Speaker 2: how we approached his illness. I truly, in my deepest soul,
Speaker 2: believed that THEO was going to die, and Mike, truly,
Speaker 2: in his deepest soul, thought it was possible to save him.
Speaker 2: And so if you think it's possible to save your child,
Speaker 2: you are going to devote every moment to trying to
Speaker 2: save them. And if you truly believe that their diagnosis
Speaker 2: is a death sentence, you are going to try to
Speaker 2: figure out how to survive that. So that's what I
Speaker 2: was doing, yeah, to make.
Speaker 1: Their remaining days as comfortable and joyful as possible, because
Speaker 1: more treatments come with a huge trade off to quality.
Speaker 2: Of life exactly, And there was a constant push and
Speaker 2: pull in what Mike and I were willing to put
Speaker 2: the O through. We both agreed from the beginning that
Speaker 2: his quality of life was going to come first. Yep.
Speaker 2: But when you believe it's possible to save someone, you're
Speaker 2: maybe willing to put them through a little bit of discomfort, right,
Speaker 2: And if I thought he was unsavable, I didn't want
Speaker 2: him to experience any discomfort, of course, And Mike and
Speaker 2: I got into so many fights about this because Mike
Speaker 2: thought that I was being pretty selfish. I was crying
Speaker 2: all the time. I was very much like why, oh, why,
Speaker 2: And anytime I would say I can't believe this is happening,
Speaker 2: he just thought that was such a waste of time
Speaker 2: to be thinking like that, like it's happening, what can
Speaker 2: we do about it? And also he thought he didn't
Speaker 2: understand why I was grieving so heavily while THEO was
Speaker 2: still alive, and I just thought Mike was in denial.
Speaker 2: But I agreed to treat THEO because Mike basically was like,
Speaker 2: if we don't try, I will not be able to
Speaker 2: live with myself. I will not be able to live.
Speaker 2: So I said, Okay, we can try.
Speaker 1: What did trying harder look like for Mike.
Speaker 2: Mike started diving into research. This is his way of
Speaker 2: coping with things, is he wants to find out all
Speaker 2: the information. And so as he's finding out information, he's
Speaker 2: finding out, Okay, there is someone that used an oncle
Speaker 2: helmet with their kid and it helped. And there's this
Speaker 2: drug and there's that drug, and this is in clinical trial.
Speaker 2: And so he dealt with his pain over this situation
Speaker 2: by throwing himself into research, educating himself on all the options.
Speaker 2: And as he was doing that, he started to feel
Speaker 2: some hope. Yeah, he started reaching out to doctors around
Speaker 2: the world. He had we recorded it. I think it
Speaker 2: was one hundred and thirty conversations. This is all him.
Speaker 2: I was doing basically none of this, and he put
Speaker 2: together a treatment plan for THEO. And I think it
Speaker 2: was his way of being, like, I'm his father, I
Speaker 2: am going to try, even if I end up failing,
Speaker 2: which I put failing in quotes because I don't view
Speaker 2: our child dying of cancer as a failure, but he
Speaker 2: did for a long time.
Speaker 1: And I also understand. I mean, part of Mike's approach was,
Speaker 1: or maybe his subconscious intent was to stave off a
Speaker 1: total feeling of helplessness, right to wake up with a
Speaker 1: feeling of purpose and meaning and that there is something
Speaker 1: you can do at all to try to improve the
Speaker 1: prognosis for your kid. I mean, without that, it is
Speaker 1: just despairing, devastation every day, which you were, okay, embodying,
Speaker 1: But for some people it's just as someone who loves
Speaker 1: being in control, you know, I can relate to wanting
Speaker 1: to feel some semblance of agency in a situation in
Speaker 1: which I am actually powerless, right, or I might be powerless,
Speaker 1: but if you told me, well, there's a two percent
Speaker 1: chance there's a treatment just waiting on page eight hundred
Speaker 1: and fifty four of Google Search, or within the algorithms
Speaker 1: or within the AI bots. At least it fills my restless, agitated,
Speaker 1: anxious mind with something.
Speaker 2: That's exactly right, that is exactly how he felt. It
Speaker 2: gave him a lot of purpose. And he's someone that's
Speaker 2: always he doesn't really take authority super well, so if
Speaker 2: someone tells him he can't do something, he's like, oh, yes,
Speaker 2: I can. Yeah.
Speaker 1: Yeah.
Speaker 2: So when the doctor said he will not live through this,
Speaker 2: he was like, well, watch me try. And I don't
Speaker 2: really have that I kind of like authority. I listened
Speaker 2: to authority. I'm sort of I'm a rule follower, and
Speaker 2: I think in my way I wanted agency as well.
Speaker 2: I also hate being out of control, but I didn't
Speaker 2: view it as in my control to save his life.
Speaker 2: So instead I started to say, well, maybe I can
Speaker 2: get in control of the grief. Yes, because I truly
Speaker 2: couldn't see how my son dying was something I would
Speaker 2: live through. It was like, this has to kill me,
Speaker 2: This is going to kill me. How do I not
Speaker 2: let this kill me? One visual that is so interesting
Speaker 2: is we have you know, we share a bed, We've
Speaker 2: got two nightstands. All of the books on my nightstand
Speaker 2: were about grief and death and loss, and all of
Speaker 2: the books on his nightstand were about the hada Bbolic
Speaker 2: approach to treating cancer. It was all about cancer treatment,
Speaker 2: the keto diet. He was uninterested in reading about grief,
Speaker 2: and I was uninterested in reading about treating cancer. And
Speaker 2: so I think in both of our ways, we were
Speaker 2: trying to hold onto some control. Yeah, it just looked
Speaker 2: really different. What we were trying to control looked really different.
Speaker 1: What happens when you feel alienated and lonely in your
Speaker 1: marriage because you're having two radically different approaches to your
Speaker 1: son's cancer diagnosis. How does that feel? And what did
Speaker 1: you do to cope with that fissure? That, as we
Speaker 1: discussed earlier, you can't predict how you and your spouse
Speaker 1: will respond to the animal dropping from the sky moment, Like,
Speaker 1: that's not what we're solving for when we're deciding who
Speaker 1: to marry, Like, we don't know we don't even know
Speaker 1: how we will respond when catastrophe hits, So how could
Speaker 1: we possibly get ahead of this and anticipate how the
Speaker 1: other person will respond?
Speaker 2: Yes, yes, it felt terrible. It started to feel like
Speaker 2: we were enemies. And we had a very strong marriage
Speaker 2: before this, but it was definitely the worst fights we've
Speaker 2: ever gotten into because it was literal life and death,
Speaker 2: Like the stakes could not have been higher. One thing
Speaker 2: that is really interesting is we were both so sad
Speaker 2: and so scared and so angry at the world, at
Speaker 2: the fact that this was happening to our beautiful boy,
Speaker 2: and there was nothing There was no other outlet for
Speaker 2: our anger besides to each other. So I think a
Speaker 2: lot of the fights we had were us just letting
Speaker 2: out some of the darkness that we felt at the world,
Speaker 2: and we just we had nowhere else to put it
Speaker 2: besides to each other. And you know, when THEO was around,
Speaker 2: we were really trying to put on a good front
Speaker 2: because we didn't want him to be scared, and there
Speaker 2: was so much soothing of him that we were doing that.
Speaker 2: Then once he went to bed, Mike and I were
Speaker 2: pretty pretty much on our own islands. Thankfully, we have
Speaker 2: a huge support system. This was absolutely life saving for
Speaker 2: all of us. My family basically relocated to LA to
Speaker 2: help take care of us as we took care of THEO.
Speaker 2: So I didn't feel like I was reliant on Mike
Speaker 2: to take care of me. Yeah, thank god, because he
Speaker 2: couldn't and I couldn't take care of him. I will say,
Speaker 2: even as we had that divide in our treatment approach,
Speaker 2: we did work together constantly. I mean, we had this
Speaker 2: sort of choreography with theo's radiation in his hospital visits
Speaker 2: where you know, I would wheel the wheelchair in and
Speaker 2: Mike would park the car. We had like a dance
Speaker 2: that we would do, and so we were a team,
Speaker 2: even if fundamentally there were some really big differences in fissures.
Speaker 1: Ali, you ended up having nine months with THEO from
Speaker 1: the point of diagnosis. Can you share the arc of
Speaker 1: those nine months and what your final days with him
Speaker 1: looked like.
Speaker 2: The first four months, THEO was really a shell of himself,
Speaker 2: and it felt like the light was kind of out
Speaker 2: in his eyes. Slowly he became more interactive. He was
Speaker 2: still not speaking or walking.
Speaker 1: And what was that due to? Was that a result
Speaker 1: of the radiation.
Speaker 2: Or Yeah, it was a result of the radiation. So
Speaker 2: then we kept getting little bits of him back, little
Speaker 2: bits of him back. We got laughs, we got smiles.
Speaker 2: And then in May, four months after he was diagnosed,
Speaker 2: he started speaking again and Maya, it felt like he
Speaker 2: was back from the dead.
Speaker 1: Wow, what a gift, What a gift.
Speaker 2: And it wasn't just the speaking, He really started coming
Speaker 2: back to life.
Speaker 1: Ye. His theonis hit.
Speaker 2: Yeah, and it was so insane of an experience. We
Speaker 2: were high as hell from this. We were so high. Yeah,
Speaker 2: And that ushered in a summer of some really beautiful times.
Speaker 2: We took him on a lot of trips, and then
Speaker 2: in July he started walking again, which was another thing
Speaker 2: that was like mind blowing. I could not believe I
Speaker 2: was seeing him walk again. I was so proud of him.
Speaker 2: I'm still so proud of him, Like the resilience that
Speaker 2: this kid had, and it was so it was so beautiful,
Speaker 2: It was so beautiful, and so all of a sudden
Speaker 2: it was like light again and the world was restored
Speaker 2: to color. And then in the fall his tumors started
Speaker 2: growing back. It was a fast decline. The month of
Speaker 2: October was really really bad. Mike was really desperate to
Speaker 2: change course and try to save him, and we could
Speaker 2: feel that the end was coming. And we took him
Speaker 2: to Disneyland for his birthday and he had a brain
Speaker 2: hemorrhage in the Disneyland hotel around midnight as his birthday started,
Speaker 2: his fourth birthday, and that is the day he died.
Speaker 2: His death was beautiful, question Mark. I hesitate to call
Speaker 2: it beautiful because the death of a child is the
Speaker 2: ugliest thing a person could experience. But his actual death
Speaker 2: was in our bed at home, and I remember the
Speaker 2: light streaming in from the windows, and we got to
Speaker 2: do it on our own terms. We didn't take him
Speaker 2: back to the hospital. We knew there was nothing they
Speaker 2: could do for him, and so we spent the whole
Speaker 2: day in bed with him, holding him and saying goodbye.
Speaker 2: So in that way. It was very, very peaceful. He
Speaker 2: wasn't in pain. After he died, I had a moment
Speaker 2: where I felt like I experienced almost my own death.
Speaker 2: We had taken his body out to the mortuary van
Speaker 2: and I laid in and I felt my own breath
Speaker 2: slowing down, and I felt like I was dying. I
Speaker 2: hadn't really eaten in forty eight hours, and I hadn't slept,
Speaker 2: and I had just watched my son die. So in hindsight,
Speaker 2: I think my body was shutting down. And in a
Speaker 2: lot of ways, it did feel like a part of
Speaker 2: me did die. I remember thinking, you know, people are like,
Speaker 2: I don't know how you survived that. I didn't. I
Speaker 2: didn't survive it. A knew me was born that day,
Speaker 2: and the old me did die with THEO. And since
Speaker 2: having that thought, I've seen this echoed with a lot
Speaker 2: of brieved parents. I think it's what most of us feel,
Speaker 2: that we didn't come out of this alive. It's a
Speaker 2: new version of us. And as much as I thought
Speaker 2: I was prepared for his death, I was not. I
Speaker 2: really wasn't. None of the reading that I I could
Speaker 2: do about grief, or the podcast I was listening to
Speaker 2: could really prepare me for what it would feel like.
Speaker 2: All of a sudden, it felt like our house went
Speaker 2: from being on fire to not. You know, it was
Speaker 2: chaos for nine months trying to keep him alive, and
Speaker 2: then it just was quiet.
Speaker 1: I'm struck by the fact that when you first learned
Speaker 1: that THEO was likely to die, your psychological immune system
Speaker 1: kicked in and said, Ali, I need to know that
Speaker 1: there was life on the other side of this. And
Speaker 1: that's why intuitively, instinctively you said, Okay, I need to
Speaker 1: have another kid, right, like I need to believe that
Speaker 1: there is still a future here. And what's so interesting
Speaker 1: reflecting on what you're just saying now, is it's a
Speaker 1: different life on the other side of this. It's a
Speaker 1: different you on the other side of this. Like I
Speaker 1: will die in part as a result of this, but
Speaker 1: there will be a new alley, like some rebirth of sorts,
Speaker 1: and that person will have to create a new life.
Speaker 1: Is that the right way to think about it?
Speaker 2: Yes, it is. One thing that's interesting is trying to
Speaker 2: fit my new life into the mold of my old life.
Speaker 2: Sometimes I feel like I am a circle now trying
Speaker 2: to fit into a triangle shaped life.
Speaker 1: In what way.
Speaker 2: The things that made Ali one point oh happy have changed? Thankfully.
Speaker 2: My friends have been amazing, and I haven't lost friendships.
Speaker 2: A lot of brief parents lose friendships when this kind
Speaker 2: of thing happens, this kind of thing, Why am I
Speaker 2: speaking like that their child dies. I have not lost friends,
Speaker 2: but there have been certain relationships that no longer fit
Speaker 2: the way they used to. For a long time, it
Speaker 2: was very hard for me to enjoy my work. I'm
Speaker 2: a therapist and a singer, and I can't imagine seeing
Speaker 2: clients as a therapist anymore. It's very hard for me
Speaker 2: to imagine sitting across from someone and holding space for
Speaker 2: their pain when my very definition of what is hard
Speaker 2: and what is painful has changed so drastically. So many
Speaker 2: brieved parents have said that this well of empathy has
Speaker 2: opened for them, and I haven't yet experienced that. And
Speaker 2: I am an empathic person and I feel things deeply
Speaker 2: for other people, but it is hard for me sometimes
Speaker 2: to empathize with people's problems that are not of the
Speaker 2: profound loss variety. Absolutely, and as a singer for the
Speaker 2: first at least year after THEO died, I remember thinking,
Speaker 2: do I even like this? Anymore. This feels like something
Speaker 2: old Ali loved to do, and I really struggled to
Speaker 2: find the meaning in it, Like what am I doing
Speaker 2: this for? I sing on sessions for film and TV
Speaker 2: and it's a wonderful job, and I was going, well,
Speaker 2: what's the point of it? So I think that's what
Speaker 2: I mean by not feeling like I fit in my
Speaker 2: life anymore. Like the structures I had built for myself
Speaker 2: were for the old alley, and the new alley needs
Speaker 2: new things, needs new people, needs, maybe a new home,
Speaker 2: needs a new job. I couldn't go back to the
Speaker 2: old life because it didn't exist, yes, and so trying
Speaker 2: to force myself into it just felt like faking it. Really,
Speaker 2: I think, you know, I lost so much more than
Speaker 2: THEO when he died. I lost my faith in the
Speaker 2: order of the world. And I think I also like
Speaker 2: I perceive the world differently, and people perceive me differently.
Speaker 2: Walking around as a brieved parent, people are scared of
Speaker 2: me in a way that can be really uncomfortable. I
Speaker 2: have this power now that I know I could like
Speaker 2: flatten a room with my story, and sometimes that makes
Speaker 2: me feel quite powerful actually, like I'm not intimidated of anybody.
Speaker 2: I have been through something that most people have not
Speaker 2: been through, and I have survived it, and so I
Speaker 2: just wasn't I'm not scared of a lot of the
Speaker 2: things I used to be.
Speaker 1: You ended up having a second kid. When you said,
Speaker 1: I guess I need to have another kid, you did
Speaker 1: have life. So you now have two young daughters. How
Speaker 1: has your identity as a parent changed as a result
Speaker 1: of what you've been through? Like, how do you see
Speaker 1: yourself differently? Maybe parent differently, maybe not. I don't know.
Speaker 2: I am a very different parent than I was. Not.
Speaker 2: A lot scares me, but my children's health scares me tenfold.
Speaker 2: So when there's any indication that something is less than
Speaker 2: one hundred percent health with either of my daughters, the
Speaker 2: way that I spiral is really scary. And I have
Speaker 2: this this belief that has been proven that if I
Speaker 2: don't notice it, no one else will. So I have
Speaker 2: to be constantly vigilant, and that is really hard, you know.
Speaker 2: I also I have lost the ability to say it's
Speaker 2: going to be okay, I'm sure it's fine. And I
Speaker 2: think parents we underestimate how many times a day we
Speaker 2: tell ourselves that, you know, our child has a fever,
Speaker 2: our child bumps their head or falls down, and we
Speaker 2: instantly have this moment of like, uh, oh is something wrong,
Speaker 2: and then we have to say, I'm sure they're fine.
Speaker 2: And people told me I'm sure THEO is fine before
Speaker 2: he was diagnosed, and then he turned out to be
Speaker 2: the most not fine.
Speaker 1: Yeah, totally.
Speaker 2: So I have lost that ability and I miss that
Speaker 2: so much. I miss having that ability to soothe myself
Speaker 2: and be soothed by other people. No one can tell
Speaker 2: me it's going to be okay. No one can tell me, oh,
Speaker 2: that's rare, that doesn't happen, because you guess the rare,
Speaker 2: extruly rare thing happened.
Speaker 1: Yes, of course.
Speaker 2: So in that way, it has made me a more
Speaker 2: fearful parent. I was gonna say butt, but the word
Speaker 2: is and and because two things are true, right, And
Speaker 2: it has made me hyper appreciative of my children's health
Speaker 2: and they're growing bodies. I I want to say, I
Speaker 2: don't take a second of time with them for granted,
Speaker 2: but I think that's impossible.
Speaker 1: We're still a mom with young kids.
Speaker 2: Like It's just one thing that is so fascinating to
Speaker 2: me about the human condition is how adaptable we are
Speaker 2: as humans like this life. I never thought I could
Speaker 2: adapt to of caring for a critically ill child. I
Speaker 2: did adapt to it, and then after his death, I
Speaker 2: have adapted. And I think I would have said to myself,
Speaker 2: I will never worry about anything trivial ever again. But
Speaker 2: here two years after his death, of course I worry
Speaker 2: about trivial things still because I have now adapted back
Speaker 2: into this like normal life.
Speaker 1: And you know what, that's a sign of healing. I
Speaker 1: still remember my family was processing a really devastating diagnosis
Speaker 1: and my husband, Jimmy, and I were just beside ourselves
Speaker 1: with grief and anxiety and agitation. And I think it
Speaker 1: was like it was about two months later, like one
Speaker 1: of us complained. I think I think Jimmy complained about work,
Speaker 1: And I remember pausing in the conversation and telling him, like,
Speaker 1: do you know what a great sign that is that,
Speaker 1: like you care enough about work that you're irritated by it,
Speaker 1: whereas before, like literally nothing else mattered other than this
Speaker 1: diagnosis we were navigating as a family, you know, A yep,
Speaker 1: And yeah, it's such a good sign. It's a beautiful sign.
Speaker 1: I want you to sweat the small stuff.
Speaker 2: God, I want to too. But I love that reframe
Speaker 2: because sometimes it makes me feel ridiculous. Sometimes they'll say
Speaker 2: to Mike, I know this isn't a real problem, but
Speaker 2: you're right. That is a sign. That is a sign
Speaker 2: of healing.
Speaker 1: Yeah, And it's like a subconscious signal to your brain
Speaker 1: that you don't always have to live in this high
Speaker 1: stakes environment. There's allowed to be low stake stuff that
Speaker 1: you care about. That's good. That's balancing, right, it's good.
Speaker 1: I don't think we evolve to just take signals from
Speaker 1: the massive stuff. It's overwhelming if that's the only stuff
Speaker 1: that gets in, you know.
Speaker 2: Yep, yep, you're right. You know.
Speaker 1: I rarely share the origin story for me meeting the
Speaker 1: people I have on the show, but I do want
Speaker 1: to share with listeners that you and I had this
Speaker 1: fortuitous meeting backstage at this audio festival called on AirFest,
Speaker 1: and you came up to me, and I was so
Speaker 1: immediately drawn to you, Ali, like you you have an
Speaker 1: infectious joy, it's captivating. You're like a magnet, and you
Speaker 1: exposed so much of who you were to me within moments.
Speaker 1: And I just remember in that moment thinking like, Ali
Speaker 1: didn't have to be taught any lessons from the universe,
Speaker 1: like she already got it, She was already grateful, she
Speaker 1: was already joyful. She didn't need to be taught like
Speaker 1: live each day to the fullest and don't take joyful
Speaker 1: things for granted. I hate manufacturing silver linings out of
Speaker 1: just harrowing experiences. But I'm curious to know whether there
Speaker 1: was something redemptive for you about this experience.
Speaker 2: Yes, the answer is yes. And first of all, that
Speaker 2: is so incredibly moving to hear you say, because I
Speaker 2: don't know how how I'm perceived, and to be mirrored
Speaker 2: back that you experience me as someone that still has
Speaker 2: a lot of light coming from them is very meaningful
Speaker 2: because that was one of the things I was the
Speaker 2: most scared about, was that I would lose my light
Speaker 2: and like, what good would that do? THEO. Yeah, there
Speaker 2: have been so many things I have learned. I think
Speaker 2: I used to truly believe that I was not a
Speaker 2: person that could do hard things. I had a very
Speaker 2: fortunate upbringing. I always felt exceedingly lucky in my life,
Speaker 2: to the point where I wondered if I was too lucky,
Speaker 2: Like I was always worried the other shoe was going
Speaker 2: to drop. I felt like I didn't earn any of this,
Speaker 2: and if something is unearned, it can be taken away too,
Speaker 2: And so I always was very worried that my luck
Speaker 2: would run out and that I couldn't co with that somehow.
Speaker 2: And so Theo's illness and death has taught me that
Speaker 2: I am much more capable than I ever thought I was,
Speaker 2: that of course I can do hard things, that I'm
Speaker 2: very brave, and I say brave in the way that
Speaker 2: I've learned that I don't think certain people are braver
Speaker 2: than others. I think that life demands certain things of people,
Speaker 2: and we do it because what other choice is there.
Speaker 2: So there is a power that I feel in myself
Speaker 2: that I didn't feel before. To your point, I agree
Speaker 2: with you that I don't think I needed to be
Speaker 2: taught certain lessons like I liked who I was before.
Speaker 2: I have heard a lot of people say I like
Speaker 2: who I am now so much more. I don't know
Speaker 2: that I do, because I liked who I was before
Speaker 2: and I didn't really want to change. I didn't really
Speaker 2: want to change, so I really felt like I was dragged,
Speaker 2: kicking and screaming through this. You met me at a
Speaker 2: point that was very different from the first year after
Speaker 2: my son died. There was a lot of time where
Speaker 2: I was like, I feel like I'm hanging onto a
Speaker 2: flagpole and I'm blowing in the wind like a flag
Speaker 2: and the flagpole is my old life, and I'm saying,
Speaker 2: this isn't my life. This current life I'm living in
Speaker 2: is wrong. This is not how it should be. Theo's
Speaker 2: supposed to be alive. It's supposed to be THEO and
Speaker 2: my daughter, Remy, and I'm a mom of two and
Speaker 2: I have a five year old. And then I heard
Speaker 2: this inner voice of myself saying let go, Like you
Speaker 2: have to let go that life doesn't exist anymore. You
Speaker 2: have to let go and let the wind carry you
Speaker 2: into your new life. You don't have a choice. And
Speaker 2: I think I have reached that level of acceptance. I
Speaker 2: will never be okay with what happened to THEO, but
Speaker 2: I accept that this is my life now. Yeah. And
Speaker 2: for a long time I didn't accept it. I was
Speaker 2: really fighting it. Yeah, And so I'm proud of myself
Speaker 2: for that. Again, it feels like not a choice, Like
Speaker 2: either I can live in the past and be fighting
Speaker 2: and kicking and screaming my entire life which again is
Speaker 2: not helpful for THEO, and it's certainly not helpful for
Speaker 2: my daughters, and it's not fair to me. There's a
Speaker 2: thing that a lot of brieved parents or people will
Speaker 2: tell you, you have to live for your kids, and but
Speaker 2: also like, don't I My life is worth something too,
Speaker 2: And so I I realized pretty early on that me
Speaker 2: dying with THEO, my spirit, dying with THEO, was not
Speaker 2: what I wanted. It was really not what I wanted.
Speaker 1: You know, I'm imagining that there are me any people
Speaker 1: listening who, in some way or another have to let
Speaker 1: go of that flagpole and rebuild a life because their
Speaker 1: old life can't accommodate their new grief. The puzzle pieces
Speaker 1: don't fit. Like you said, what advice would you have
Speaker 1: for a person who is climbing out of the rubble
Speaker 1: of an unexpected, awful change and is trying to rebuild
Speaker 1: that life anew right? Like you said, the things that
Speaker 1: used to make them happy don't make them happy the
Speaker 1: way they used to live, the way their schedules used
Speaker 1: to run, that those aren't the same things. Like that,
Speaker 1: everything feels foreign. You feel like a foreigner almost in
Speaker 1: your own body. Yes, do you have any advice for
Speaker 1: someone in that situation.
Speaker 2: Hmm. Sometimes I feel self conscious offering advice because they
Speaker 2: would imply that I have anything figured out, and I
Speaker 2: don't feel like i'd do. But I feel a sense
Speaker 2: of openness. I never in a million years thought I
Speaker 2: would be someone who has a dead child, and that happened,
Speaker 2: and so if that happens, what else in my life
Speaker 2: do I not in a million years think could happen?
Speaker 2: That could also happen. So there's an openness of like
Speaker 2: I always thought I needed to do X y Z
Speaker 2: with my life and live in this place, and that
Speaker 2: this was the path, But my path has changed completely
Speaker 2: one time, and so maybe maybe nothing is set in stone.
Speaker 2: So the openness can be both exciting and very scary.
Speaker 2: So I think what I would tell someone in that
Speaker 2: crawling out space is first of all, not to rush
Speaker 2: any kind of growth. Just surviving is more than enough,
Speaker 2: and that clarity will come. You don't have to force clarity.
Speaker 2: It will come just by living through what you're living through.
Speaker 2: And I think I'm by being so much more aware
Speaker 2: of how little time we are guaranteed on this earth.
Speaker 2: There's this sense of like, why not just do it? Now,
Speaker 2: Mike and I borrow a phrase from THEO that he
Speaker 2: said when he was in treatment, there was something going
Speaker 2: on at the hospital and they said, okay, well we
Speaker 2: can do it for you on Thursday, and he said,
Speaker 2: why not today? And so we use why not today
Speaker 2: very frequently as kind of a kick in the butt.
Speaker 2: If you want to do this, why not today. My
Speaker 2: personal belief system is that I have one life here
Speaker 2: on earth, and so while that does me a disservice
Speaker 2: and that I don't have the comfort that a lot
Speaker 2: of parents do where they say I'm going to see
Speaker 2: my child again in heaven, I wish I could believe that.
Speaker 2: It's not really part of my belief system, but the
Speaker 2: benefit of it is that I'm like, Okay, this is
Speaker 2: the time I have. And with Theo's death, I truly
Speaker 2: do not know what's going to happen tomorrow, and I
Speaker 2: understand that in a way that I never did before.
Speaker 2: I know that the present moment is all I have
Speaker 2: and I don't want to waste it.
Speaker 1: Hey, thanks so much for listening. Ali hosts a podcast
Speaker 1: for parents who have lost a child, and I recommend
Speaker 1: it for anyone who is struggling with loss. You can
Speaker 1: also check out our episode of A Slight Change of
Speaker 1: Plans called Lessons from a Grief Therapist with the amazing
Speaker 1: therapist Julia Samuel. We'll leave a link to both in
Speaker 1: the show notes. If you've heard a story recently that
Speaker 1: you think we should know about, be sure to email
Speaker 1: us or send us a voice memo at slight Change
Speaker 1: at Pushkin dot fm. That's slight Change at Pushkin dot fm.
Speaker 1: Make sure you follow a Slight Change of Plans wherever
Speaker 1: you listen to podcasts. We'll be back in a week
Speaker 1: with another episode. I'll see you then. A Slight Change
Speaker 1: of Plans is created, written, and executive produced by me
Speaker 1: Maya Shunker. The slight Change family includes our showrunner Alexandra Garatin,
Speaker 1: our editor Daphne Chen, our lead producer Megan Lubin, our
Speaker 1: associate producer Sonia Gerwitt, and our sound engineer Erica Huang.
Speaker 1: Louis Scara wrote our delightful theme song and Ginger Smith
Speaker 1: helped arrange the vocals. A Slight Change of Plans is
Speaker 1: a production of Pushkin Industries. So big thanks to everyone there,
Speaker 1: and of course a very special thanks to Jimmy Lee