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