WEBVTT - When Grief Remakes You 0:00:14.956 --> 0:00:15.396 Pushkin. 0:00:29.956 --> 0:00:31.596 There was a lot of time where I was like, 0:00:31.756 --> 0:00:34.676 I feel like I'm hanging onto a flagpole, and the 0:00:34.756 --> 0:00:38.276 flagpole is my old life, and I'm saying, this isn't 0:00:38.316 --> 0:00:40.956 my life. This current life I'm living in is wrong, 0:00:41.236 --> 0:00:43.276 This is not how it should be. THEO is supposed 0:00:43.276 --> 0:00:43.756 to be alive. 0:00:44.756 --> 0:00:47.956 In twenty twenty three, Ali Kramer received a phone call 0:00:48.076 --> 0:00:51.316 that changed her life. On the other end of the line, 0:00:51.476 --> 0:00:54.236 a doctor told her that her three year old son, Theo, 0:00:54.636 --> 0:00:58.076 had terminal brain cancer. In the months and years that 0:00:58.156 --> 0:01:02.316 followed Theo's diagnosis, Ali kept a steel grip on her 0:01:02.436 --> 0:01:05.876 old life until she had a realization. 0:01:05.916 --> 0:01:10.036 That life doesn't exist anymore, and you're in holding on 0:01:10.556 --> 0:01:13.156 to a flagpole in the wind. You have to let 0:01:13.236 --> 0:01:18.996 go and let the wind carry you into your new life. 0:01:20.476 --> 0:01:25.196 On today's episode, when Grief dissolves one identity and creates another, 0:01:27.556 --> 0:01:31.556 I'm Maya Shunker, a scientist who studies human behavior. And 0:01:31.676 --> 0:01:34.716 this is a slight change of plans, a show about 0:01:34.716 --> 0:01:37.476 who we are and who we become in the face 0:01:37.596 --> 0:01:49.396 of a big change. I met Ali backstage at a 0:01:49.396 --> 0:01:52.876 live event a few months ago. It was a chaotic scene, 0:01:53.196 --> 0:01:55.596 but the minute Ali and I started talking. I was 0:01:55.716 --> 0:01:58.916 fully locked in. Ali is one of those people with 0:01:58.956 --> 0:02:03.076 whom you find yourself immediately at ease. She is joyful 0:02:03.196 --> 0:02:06.196 and present and as curious about you as she is 0:02:06.316 --> 0:02:09.316 open about the most painful thing that's happened to her, 0:02:09.716 --> 0:02:13.076 the loss of her son, THEO. Within moments of hearing 0:02:13.116 --> 0:02:15.516 her story, I knew you had to hear it too. 0:02:16.436 --> 0:02:19.236 When Ali and I sat down for this conversation, it 0:02:19.236 --> 0:02:21.556 had been two and a half years since THEO died. 0:02:22.436 --> 0:02:25.156 We started off by talking about how he lived. 0:02:25.876 --> 0:02:31.156 Oh God, THEO was. He was so vivacious. He was 0:02:31.276 --> 0:02:37.876 really magnetic. He was like sunshine. He had this curly, 0:02:37.956 --> 0:02:42.836 dirty blonde hair and these huge brown eyes, and he 0:02:42.956 --> 0:02:46.516 was just always on the move. He was always moving, 0:02:46.556 --> 0:02:48.676 he was always talking. He was really loud. He was 0:02:48.716 --> 0:02:51.596 a very tiny kid, but he was really big, Like 0:02:51.676 --> 0:02:55.716 his personality was really big. His energy was big. There's 0:02:55.836 --> 0:03:00.116 that like extremely cliche saying that dance like no one's watching, 0:03:00.196 --> 0:03:01.796 sing as if no one can hear you, And that 0:03:01.996 --> 0:03:07.476 was how he lived. I remember right before his third birthday, 0:03:08.076 --> 0:03:11.876 he was dancing so crazily on the lawn at the 0:03:11.916 --> 0:03:17.036 Americana in Glendale. Huge public space, so many people there, 0:03:17.076 --> 0:03:19.596 and it was as if he was totally unaware that 0:03:19.636 --> 0:03:23.956 there was anyone else there. And he was laughing and giggling, 0:03:24.516 --> 0:03:27.356 and I remember thinking, I've never seen a person so free. 0:03:28.436 --> 0:03:32.036 There was no self consciousness, and that is really inspiring. 0:03:32.316 --> 0:03:36.076 Everywhere we went, people noticed him in a way that 0:03:36.276 --> 0:03:37.796 was kind of crazy. 0:03:37.796 --> 0:03:40.156 Like he drew strangers to him. People were like, whoa, 0:03:40.196 --> 0:03:41.876 there's a light in this kid. 0:03:42.276 --> 0:03:45.116 Yes, exactly. And I was aware of that. And I 0:03:45.156 --> 0:03:46.756 think as a parent, you know, you're not allowed to 0:03:47.876 --> 0:03:50.596 say out loud that you think your child is super special, 0:03:50.636 --> 0:03:54.876 but I think he was super special. Yeah. I loved 0:03:54.956 --> 0:03:57.836 talking to him. I loved seeing what he was thinking about. 0:03:58.156 --> 0:04:00.396 You know, any parent, I think, can relate to that 0:04:00.516 --> 0:04:04.316 when your kids starts talking and you really find out 0:04:04.356 --> 0:04:08.076 what's on their mind and how their mind works. Every 0:04:08.156 --> 0:04:11.596 day that passed by another chance to see who he 0:04:11.756 --> 0:04:12.316 was becoming. 0:04:12.956 --> 0:04:17.516 Is there a memory of something really quirky or funny 0:04:17.916 --> 0:04:21.756 or insightful when you would probe his inner mine? 0:04:22.356 --> 0:04:25.596 Yes. We were once sitting on our front porch and 0:04:25.636 --> 0:04:28.756 there was some wind and he said, look, Mom, the 0:04:28.796 --> 0:04:32.836 grass is dancing. And I said, what do you think 0:04:32.876 --> 0:04:35.516 it's dancing to And he said, I think the grass 0:04:35.556 --> 0:04:38.516 is dancing to the music of the wind. Oh my gosh, 0:04:38.516 --> 0:04:41.556 and I am right. And I immediately took out my 0:04:41.676 --> 0:04:43.716 phone because I was like, I got to write this 0:04:43.756 --> 0:04:47.476 down in my notes, app what the hell is this 0:04:47.596 --> 0:04:49.236 kid actually eighty five years old? 0:04:49.276 --> 0:04:51.676 I mean, it was just so wild and also clearly 0:04:51.716 --> 0:04:53.276 a son of two artists. 0:04:53.516 --> 0:04:53.876 I guess. 0:04:53.876 --> 0:04:58.716 So how old was THEO when you first started to 0:04:58.876 --> 0:05:00.276 notice that something was off? 0:05:02.076 --> 0:05:04.636 He was three years old and three months and it 0:05:04.716 --> 0:05:07.436 was the last week of January that I noticed that 0:05:07.596 --> 0:05:09.756 his balance was a little bit off, And it was 0:05:09.836 --> 0:05:12.796 so slight that I was the only one that noticed it. 0:05:13.476 --> 0:05:17.356 He wasn't falling, but he was tripping a tiny bit more. 0:05:18.476 --> 0:05:21.076 And I remember I did have the thought, is his 0:05:21.196 --> 0:05:24.476 voice a little bit slower? He had been sick from 0:05:24.556 --> 0:05:27.876 preschool a lot, and so you know, when your kid 0:05:27.916 --> 0:05:30.756 is sick, maybe they're talking a little bit slower like this, 0:05:31.436 --> 0:05:33.796 And I remember having thought, is he I don't know? 0:05:34.556 --> 0:05:37.396 What is he usually like? You know, it's that sense 0:05:37.436 --> 0:05:40.796 of like is the milk bad? I can't tell, because 0:05:40.876 --> 0:05:43.836 what does milk usually smell like? Mike, my husband didn't 0:05:43.876 --> 0:05:46.676 notice it. His teachers at school didn't notice it, and 0:05:46.756 --> 0:05:50.196 so I felt like maybe I was going crazy. Mike 0:05:50.356 --> 0:05:52.796 was sure that it was growing pains. He said, I'm 0:05:52.796 --> 0:05:55.396 sure it's just a growth spurt, but it seemed a 0:05:55.396 --> 0:05:58.116 little bit off to me. THEO was also really, really 0:05:58.156 --> 0:06:01.796 anxious in a way that he hadn't been before. And 0:06:01.876 --> 0:06:04.756 I remember we were at a party at a friend 0:06:04.796 --> 0:06:08.436 of his house and they had a play structure and 0:06:08.516 --> 0:06:10.756 THEO was to climb to the top of the play 0:06:10.756 --> 0:06:14.316 structure and he hadn't been before, and I remember thinking, Oh, 0:06:14.356 --> 0:06:20.716 that's weird. He's really anxious. And it's only until all 0:06:20.756 --> 0:06:24.356 of these things start to really build that my mind 0:06:24.396 --> 0:06:26.956 started connecting them. 0:06:27.396 --> 0:06:30.756 Yes, because in isolation, any one of these things would 0:06:30.796 --> 0:06:33.236 maybe have not set off the alarm bells. But then 0:06:33.276 --> 0:06:37.596 when you start to aggregate them, you're like, oh, whoa wait, 0:06:37.636 --> 0:06:40.996 something might really be wrong. Is that right, okay? 0:06:41.756 --> 0:06:47.516 And then it wasn't until January thirty. First. I remember 0:06:49.316 --> 0:06:51.596 I was taking him to school in the morning and 0:06:51.636 --> 0:06:53.316 I said, let's run to the car. I wanted to 0:06:53.316 --> 0:06:56.356 see if he could run, and his gait was really off, 0:06:56.636 --> 0:06:59.116 and I thought, oh, man, I don't like this. And 0:06:59.116 --> 0:07:01.396 when he got home from school, he was super tired. 0:07:01.556 --> 0:07:04.516 He took a really long nap and when he woke 0:07:04.596 --> 0:07:07.676 up he was super disoriented, and that was the first 0:07:07.716 --> 0:07:10.716 time his words were slurred. And then I called the 0:07:10.756 --> 0:07:12.916 doctor and I said, hey, I want to run something 0:07:12.956 --> 0:07:16.316 by you. He is swerving and falling. At that point, 0:07:16.396 --> 0:07:18.436 he actually was falling down, and they said take him 0:07:18.436 --> 0:07:22.356 to the er. I remember Mike and I drove separately 0:07:22.676 --> 0:07:24.796 because we had a five month old at the time, 0:07:24.876 --> 0:07:29.036 my daughter, Remy, and I did not know what I expected. 0:07:30.436 --> 0:07:33.116 But when we got there, he was actually acting fine, 0:07:33.356 --> 0:07:36.396 and the er doctor did not seem concerned, and I 0:07:36.476 --> 0:07:39.956 truly thought they all thought I was crazy. I was like, no, 0:07:39.996 --> 0:07:43.236 I promise, he really was slurring his words, and I 0:07:43.236 --> 0:07:46.156 remember them saying we could do a CT scan, but 0:07:46.756 --> 0:07:48.716 it's a lot of radiation for a toddler, and I 0:07:48.716 --> 0:07:52.836 don't know if it warrants it. And so then at 0:07:52.836 --> 0:07:56.596 some point I went home to relieve our babysitter with 0:07:56.636 --> 0:07:59.396 my daughter and Mike stayed at the hospital with THEO 0:08:00.036 --> 0:08:02.396 and they did a CT and even then Mike and 0:08:02.476 --> 0:08:05.996 I were kind of fighting about it. He was really annoyed, honestly, 0:08:06.116 --> 0:08:10.476 with my anxiety about theo's health. He was texting being like, see, 0:08:10.476 --> 0:08:11.956 this is why I didn't think we should come to 0:08:11.956 --> 0:08:14.636 the hospital. It's going to set off this chain of 0:08:14.676 --> 0:08:16.676 events and they're going to do all these interventions that 0:08:16.716 --> 0:08:18.796 we don't need. We should have just waited till tomorrow. 0:08:19.516 --> 0:08:22.796 And then Mike called me in the evening and said 0:08:22.836 --> 0:08:29.596 they found something on his brain. My first reaction was 0:08:30.516 --> 0:08:33.236 what is it? What's on his brain? And he said, 0:08:33.276 --> 0:08:35.996 they don't know. There are three things that could be. 0:08:36.196 --> 0:08:38.636 It could be a brain tumor. That's the most serious 0:08:38.676 --> 0:08:43.836 thing and the least likely. It could be swelling from encephalitis, 0:08:44.436 --> 0:08:47.476 which is treatable. It's really a dangerous condition, but it's treatable. 0:08:48.116 --> 0:08:50.116 Or it could be, you know, some kind of inflammation 0:08:50.236 --> 0:08:54.036 from an autoimmune illness. Mike was at the doctor with him. 0:08:54.036 --> 0:08:55.956 They said they need to do an MRI to figure 0:08:55.956 --> 0:08:57.916 out what it is, and they don't have a pediatric 0:08:57.956 --> 0:09:01.956 anesthesiologist on staff at the hospital we were at, so 0:09:01.996 --> 0:09:05.836 we're going to transfer him to a different hospital. And 0:09:05.996 --> 0:09:11.596 as I'm just at home feeling like totally powerless, saying 0:09:11.716 --> 0:09:14.356 text me, you know, call me with any updates, I 0:09:14.396 --> 0:09:17.436 get a call from the pediatrician at theo's doctor's office. 0:09:17.476 --> 0:09:20.396 It was this on call pediatrician. I remember exactly where 0:09:20.436 --> 0:09:24.716 I was standing, and I said, Hey, what's going on? 0:09:25.876 --> 0:09:30.156 And she said, it's most likely a brain tumor. That 0:09:30.276 --> 0:09:34.796 was a moment where everything changed. It was like all 0:09:34.796 --> 0:09:39.476 the air left the room. I said, excuse me, and 0:09:39.516 --> 0:09:42.196 she said it in the exact same phrasing, it's most 0:09:42.236 --> 0:09:48.796 likely a brain tumor. And I said, Mike said it 0:09:48.836 --> 0:09:51.356 could be encephalitis. Mike said, it could be swelling. Is 0:09:51.396 --> 0:09:57.236 that possible too, and she said, yeah, it's possible. They 0:09:57.276 --> 0:10:01.116 don't look identical on the scan. Yeah, I guess it's possible. 0:10:01.156 --> 0:10:04.836 Let's wait to find out. But once you hear that, 0:10:05.956 --> 0:10:06.996 Once I heard. 0:10:06.716 --> 0:10:09.116 That brain cancer, you can't unhear that. 0:10:09.316 --> 0:10:13.236 Yeah, brain cancer. Yeah, and my mind immediately went to 0:10:13.356 --> 0:10:16.116 he's going to die, even though I didn't know what 0:10:16.236 --> 0:10:19.316 kind of brain cancer it was. I think I had 0:10:19.356 --> 0:10:24.796 to go to the worst case scenario because for me, 0:10:25.076 --> 0:10:30.116 I think if I can get to the worst case 0:10:30.116 --> 0:10:33.196 scenario and get ahead of it in my head, then 0:10:33.276 --> 0:10:34.636 anything else is manageable. 0:10:35.116 --> 0:10:39.756 Yeah, it's like trying to prepare, even though the preparedness 0:10:39.796 --> 0:10:42.596 is potentially an illusion. I really resonate with that. 0:10:43.676 --> 0:10:49.516 Yes, it was like this deep knowing or maybe just 0:10:49.596 --> 0:10:54.116 my anxiety. But just a person doesn't survive brain cancer 0:10:55.676 --> 0:10:58.796 was my thought. A three year old doesn't survive brain cancer? 0:11:00.436 --> 0:11:04.476 And how is this happening? How is this real? The 0:11:04.516 --> 0:11:10.036 hours that followed were so dark, true, like a dark 0:11:10.156 --> 0:11:13.236 night of the soul. I couldn't sleep. I was at 0:11:13.236 --> 0:11:16.876 home while Mike was at the hospital getting transferred to 0:11:16.916 --> 0:11:21.076 a different hospital with THEO in an ambulance. And then 0:11:21.076 --> 0:11:24.156 the next day I went to the hospital and it 0:11:24.196 --> 0:11:27.436 was like a nightmare in slow motion. I got there. 0:11:27.996 --> 0:11:32.516 THEO couldn't walk, he was slurring, his eyes were sort 0:11:32.516 --> 0:11:35.556 of they just had lost a lot of light, and 0:11:35.596 --> 0:11:38.116 so we were just waiting and I felt like, why 0:11:38.196 --> 0:11:41.276 is there no urgency? I remember thinking I'm trapped in 0:11:41.316 --> 0:11:45.236 a nightmare. It took a really, really long time, and 0:11:45.276 --> 0:11:48.796 I remember peeking in the room and seeing the doctor 0:11:48.836 --> 0:11:51.436 that was reading it taking a screenshot on his phone 0:11:52.436 --> 0:11:55.876 and like texting someone, and I remember thinking he's getting 0:11:55.876 --> 0:12:00.476 a second opinion and it's really bad. And then he 0:12:00.516 --> 0:12:04.476 had the MRI and the doctor was about to go 0:12:04.596 --> 0:12:07.196 home and he said, I'll like, you'll you'll find out 0:12:07.196 --> 0:12:09.716 tomorrow and we said no, no, you need to tell 0:12:09.756 --> 0:12:15.036 us right now. Yeah, and oof, this part is hard 0:12:15.036 --> 0:12:21.796 to tell. And he said, THEO has a tumor in 0:12:21.836 --> 0:12:24.356 the ponds of his brain, which is the brain stem, 0:12:25.316 --> 0:12:34.196 so it's inoperable. It can't be removed surgically, and it's 0:12:34.356 --> 0:12:38.956 very hard for medication to reach this part of the 0:12:38.956 --> 0:12:41.476 brain and eradicate the cancer. So there really is not 0:12:41.796 --> 0:12:47.196 a chemo option that has been effective. There are parents 0:12:47.236 --> 0:12:51.436 that do clinical trials to try to extend their child's life, 0:12:52.876 --> 0:12:57.236 but there are no survivors of this kind of cancer, 0:12:57.316 --> 0:12:59.996 and your son probably has four to nine months to live. 0:13:04.236 --> 0:13:07.676 I think people might think that a parent finding out 0:13:07.716 --> 0:13:11.796 their child is going to die this loud moment where 0:13:11.836 --> 0:13:15.676 they fall on the floor screaming, and certainly I'm sure 0:13:15.676 --> 0:13:19.476 that many parents react that way. It's not how I reacted. 0:13:21.916 --> 0:13:27.916 I was very calm. I was very numb because I 0:13:27.956 --> 0:13:30.236 had been going through this scenario in my head for 0:13:30.276 --> 0:13:35.996 twenty four hours. Interestingly, the first thing I said to 0:13:36.036 --> 0:13:39.796 Mike was we're going to lose him, aren't we And 0:13:39.836 --> 0:13:44.476 he said, yes, I think we are. And then I said, 0:13:44.516 --> 0:13:46.516 we're going to have to have another kid, aren't we, 0:13:48.276 --> 0:13:51.236 which is really strange that I would even be thinking 0:13:51.276 --> 0:13:54.676 about having another child. But I think it was my 0:13:54.756 --> 0:13:58.556 brain's way of saying, we are going to survive. There 0:13:58.636 --> 0:14:02.796 is an after right, and we are going to still 0:14:02.836 --> 0:14:10.236 be a family. Right. It was like me attempting to 0:14:10.276 --> 0:14:14.396 propel myself into the future to assure myself that I 0:14:14.396 --> 0:14:19.956 could still have the life that I thought I was 0:14:19.996 --> 0:14:22.036 going to have, which is crazy to say, because I 0:14:22.356 --> 0:14:25.636 did know in that moment I would never have the life. Yeah, yeah, 0:14:25.636 --> 0:14:26.396 I thought I would have. 0:14:26.636 --> 0:14:29.956 But you're just protecting. It's like a psychological immune response, 0:14:30.276 --> 0:14:34.836 you know, yes, yes, grasping for some semblance of security 0:14:35.956 --> 0:14:40.116 and comfort and stability in a world that's completely crashing down. 0:14:40.356 --> 0:14:45.676 I get that. Yeah. And then I went home and 0:14:45.716 --> 0:14:49.436 I remember sitting in the rocking chair with my daughter, 0:14:49.796 --> 0:14:54.396 nursing her, and just it felt so surreal, being like, 0:14:54.476 --> 0:14:56.916 my child is going to die, and Remy is going 0:14:56.956 --> 0:14:59.516 to be the oldest, and THEO is going to die. 0:14:59.596 --> 0:15:04.276 THEO is going to die, and he has cancer and 0:15:04.316 --> 0:15:07.156 he's going to die. At this point, I still hadn't 0:15:07.156 --> 0:15:13.716 really cried. This numbness was so strange, and like you said, 0:15:13.716 --> 0:15:18.916 it was protective, clearly, and it certainly didn't last for 0:15:19.076 --> 0:15:22.996 very long, But for that night, I had this like 0:15:23.116 --> 0:15:26.916 removed distance from it. 0:15:27.956 --> 0:15:31.196 Yeah, it sounds like classic shock, which I also suffer 0:15:31.236 --> 0:15:33.716 from in the face of really devastating news. It's like 0:15:34.596 --> 0:15:37.316 my nervous system takes time to catch up. For me, 0:15:38.316 --> 0:15:44.156 I feel like I'm very incapable of absorbing information quickly 0:15:45.356 --> 0:15:49.356 because it's just too devastating. Whereas some people can rapidly 0:15:49.436 --> 0:15:53.196 assimilate the new information, I've just never been one of 0:15:53.196 --> 0:15:55.716 those people. Sounds like maybe you struggle with that too. 0:15:56.636 --> 0:15:58.516 I do, and I've never heard it put that way, 0:15:58.556 --> 0:16:01.876 And that's really helpful. Yes, I think that's right. 0:16:03.196 --> 0:16:08.956 You're told that THEO has untreatable cancer. Bring me back 0:16:08.996 --> 0:16:11.716 to the moment you saw him for the first time 0:16:11.756 --> 0:16:14.676 in the hospital after receiving that news. 0:16:15.236 --> 0:16:18.916 What was that like? What was he like? He was asleep, 0:16:20.156 --> 0:16:23.596 he had been under general anesthesia for the MRI, and 0:16:23.676 --> 0:16:34.516 he looked so tiny in that bed. He looked so 0:16:34.556 --> 0:16:44.076 beautiful and fragile, and there was this knowledge that I 0:16:44.116 --> 0:16:48.436 couldn't protect him, and he looked so in need of protection, 0:16:50.356 --> 0:16:54.756 and protecting him and caring for him had been my 0:16:54.916 --> 0:17:00.676 primary mode of being for almost three and a half years, 0:17:00.916 --> 0:17:04.956 actually more since I was pregnant with him, and all 0:17:04.996 --> 0:17:09.476 of a sudden, this little vulnerable kid is lost my 0:17:09.596 --> 0:17:16.836 grasp on being able to protect him. Seeing him decline 0:17:17.396 --> 0:17:24.116 was like a horror movie. I felt very, very desperate 0:17:24.156 --> 0:17:26.876 for the nurses and doctors to know what he looked 0:17:26.916 --> 0:17:29.636 like before, how vibrant he was. 0:17:30.836 --> 0:17:34.316 Why was that important to you, Oh God, Maya, it 0:17:34.396 --> 0:17:35.836 was so important to me. 0:17:36.236 --> 0:17:40.436 I You fight to care for the people you love, 0:17:42.076 --> 0:17:45.796 and I felt like if they would, if they loved him, 0:17:46.396 --> 0:17:49.836 they would really fight for him for his quality of life. 0:17:50.556 --> 0:17:52.396 And to know him is to love him, so they 0:17:52.396 --> 0:17:54.836 had to know him. You have to know him. We 0:17:54.916 --> 0:17:58.756 had pictures all over the room of him, because this 0:17:58.916 --> 0:18:01.356 kid that you know, he pretty quickly on. He had 0:18:01.396 --> 0:18:03.036 a feeding tube, and he had a pick line, and 0:18:03.036 --> 0:18:06.756 he had just covered in wires. Yeah, and he was 0:18:06.796 --> 0:18:09.876 sleeping and he was he wasn't speaking in and this 0:18:10.956 --> 0:18:15.556 kid lying there was just a medical patient to them, 0:18:15.956 --> 0:18:18.716 and I was in my head I just wanted to scream, 0:18:18.756 --> 0:18:21.756 this isn't just a medical patient. This is THEO. And 0:18:21.836 --> 0:18:24.796 THEO loves to run and THEO loves to dance, and 0:18:24.876 --> 0:18:28.036 THEO these are all the things that you need to 0:18:28.076 --> 0:18:32.556 know about him. I was desperate to show them videos 0:18:32.556 --> 0:18:35.956 of him. I think probably because I was desperate to 0:18:35.996 --> 0:18:39.636 see those videos as well. God. I had such a 0:18:39.676 --> 0:18:42.876 habit in that first month of watching videos of him 0:18:42.876 --> 0:18:47.236 from the before times because I missed him so much. 0:18:47.396 --> 0:18:51.596 It was like where did he go? And I wanted 0:18:51.636 --> 0:18:54.916 everyone who encountered him to know that that was the 0:18:54.956 --> 0:18:58.076 real him. This is not the real him. In hindsight, 0:18:59.156 --> 0:19:01.236 I don't love that line of thinking, because that was 0:19:01.276 --> 0:19:05.476 the real him. But I think I really bristled against 0:19:05.916 --> 0:19:08.596 this new reality. I was really fighting it. It was like, no, 0:19:08.676 --> 0:19:15.796 this is him, and gosh. I remember, even outside of 0:19:15.836 --> 0:19:20.316 the hospital, walking around the neighborhood, going from someone that 0:19:20.356 --> 0:19:23.196 people used to look at my son and you couldn't 0:19:23.196 --> 0:19:27.236 help but smile when you saw him, to someone really pitied, 0:19:27.396 --> 0:19:31.116 you know, walking him around town in his wheelchair with 0:19:31.196 --> 0:19:35.356 his bag of formula going through his feeding tube that 0:19:35.436 --> 0:19:37.396 at that point was visible, it was through his nose. 0:19:37.796 --> 0:19:41.756 Everyone stared at us and felt sorry for us and 0:19:41.796 --> 0:19:47.996 felt curious. It was so surreal, going from a life 0:19:47.996 --> 0:19:53.596 that others maybe envied, a life that I really cherished 0:19:54.316 --> 0:19:57.596 to a life that people pitied and a life that 0:19:57.676 --> 0:20:03.076 I hated. I would say I hate my life. I 0:20:03.156 --> 0:20:05.516 used to love my life, but when THEO got sick, 0:20:05.556 --> 0:20:09.676 I was like, I hate my life. So I think 0:20:10.036 --> 0:20:12.876 that's where the piece of like see him and see. 0:20:12.756 --> 0:20:19.676 Us yes makes so much sense. How do you parent 0:20:20.796 --> 0:20:24.396 a child who's dying? What does that shift look like? 0:20:27.276 --> 0:20:32.836 It felt impossible, It was so hard. There are so 0:20:32.956 --> 0:20:38.596 many things about parenthood that are oriented towards the future. 0:20:40.116 --> 0:20:43.356 Every message you get as a parent is about your 0:20:43.436 --> 0:20:47.356 child growing up, and the future. Orientation is something that 0:20:47.396 --> 0:20:50.636 I don't think we as parents even realize is so 0:20:51.756 --> 0:20:54.636 integral to the role. Exactly. 0:20:55.036 --> 0:20:59.516 You teach lessons, you impart wisdom, You withhold pleasures so 0:20:59.596 --> 0:21:02.636 they can understand how to build grit and patience and 0:21:02.676 --> 0:21:04.156 all these other character traits. 0:21:04.276 --> 0:21:07.956 That's exactly it. You're constantly thinking, is this going to 0:21:08.716 --> 0:21:11.796 instill good habits in them? What are they eating? What 0:21:11.836 --> 0:21:13.876 are they consuming? What kind of are they watching too 0:21:13.916 --> 0:21:18.676 much TV? Are they socializing enough? And all of a sudden, 0:21:20.116 --> 0:21:23.716 all of it just stops because we don't know if 0:21:23.796 --> 0:21:26.436 there are future moments. It started to just be like, 0:21:26.516 --> 0:21:29.836 what will bring him pleasure? In this moment. Yes, and 0:21:29.836 --> 0:21:34.756 we've actually been told there are not future moments ef it. 0:21:34.756 --> 0:21:36.756 It doesn't matter if he's a little bit spoiled. Let's 0:21:36.796 --> 0:21:40.116 take him to the toy store. Yes, okay, he's watching 0:21:40.676 --> 0:21:42.756 ten hours of TV a day. It's the only thing 0:21:42.756 --> 0:21:45.636 that makes him happy right now. To live in the 0:21:45.636 --> 0:21:49.596 world knowing your child is going to die, it's just 0:21:49.676 --> 0:21:53.156 so not the way we are built to live. Absolutely, 0:21:55.636 --> 0:22:00.756 it was exceedingly strange. It also, yeah, it put the 0:22:00.756 --> 0:22:06.516 emphasis so on the present moment. It's hard not to 0:22:06.596 --> 0:22:13.196 have everything feel so big. Hm. Say more, well, the 0:22:13.236 --> 0:22:17.716 good moments, even those were just a thousand pounds hm. 0:22:21.076 --> 0:22:25.076 I felt so hungry for him. It was like, memorize this, 0:22:25.236 --> 0:22:30.316 memorize his face, feel the curves of his ears. It's temporary, 0:22:30.396 --> 0:22:33.916 like grab it all of it, soak it in, soak 0:22:33.956 --> 0:22:35.276 it in. Mike and I used to look at each 0:22:35.276 --> 0:22:37.596 other and say, soak, soak, soak, soak, soak soak anytime 0:22:37.636 --> 0:22:41.956 something was good. So while while our friends and our 0:22:41.996 --> 0:22:44.436 family were so happy every time there were great moments, 0:22:44.476 --> 0:22:49.116 and so were we, they also felt impossible. Yeah, because 0:22:49.116 --> 0:22:51.756 it was like, ah, this is too precious, how much 0:22:51.756 --> 0:22:53.716 more of this? Do we have. Are things going to 0:22:53.756 --> 0:22:56.156 turn around tomorrow? Is his tumor going to start growing 0:22:56.196 --> 0:22:57.916 again tomorrow? Yeah? 0:22:57.956 --> 0:23:00.836 I'm trying to reflect on if you were to tell 0:23:00.876 --> 0:23:02.316 me I was going to lose one of my most 0:23:02.356 --> 0:23:10.956 cherished people, the task of soaking them in fully feels impossible. 0:23:10.996 --> 0:23:14.876 I don't even know what it would mean or look like. 0:23:14.916 --> 0:23:16.556 I mean, I would just stare at them and be like, 0:23:17.556 --> 0:23:20.716 can my brain be a camera right now? Can my 0:23:20.876 --> 0:23:22.796 fingertips remember the sensation of this? 0:23:23.156 --> 0:23:23.236 Like? 0:23:23.796 --> 0:23:29.556 It's such an overwhelming task to immortalize snapshots of our 0:23:29.596 --> 0:23:33.156 life in this way. It's it is. It is also 0:23:33.236 --> 0:23:35.116 not the way that we are programmed to live. 0:23:35.596 --> 0:23:35.836 You know. 0:23:35.956 --> 0:23:38.276 We are programmed in a way where moments are fleeting 0:23:38.876 --> 0:23:40.836 and we reflect on them, but we don't need to 0:23:40.916 --> 0:23:42.436 cement them. 0:23:43.196 --> 0:23:48.436 Yes, that's so hard. It feels elusive, you know it is. 0:23:48.716 --> 0:23:51.556 It felt impossible in the time, in the moment. And 0:23:51.676 --> 0:23:55.516 one thing I will say is looking back, sometimes I 0:23:55.556 --> 0:23:58.556 really have judgment towards myself for the space that I 0:23:58.636 --> 0:24:02.396 took while he was sick. I think most people, hearing 0:24:02.636 --> 0:24:04.196 that I knew my son was going to die would 0:24:04.196 --> 0:24:06.196 be like, well, you spent every second with him, didn't 0:24:06.236 --> 0:24:12.956 you and I couldn't. Yeah, I couldn't be around him 0:24:12.996 --> 0:24:15.796 twenty four hours a day because of the heaviness of 0:24:15.876 --> 0:24:20.236 all of this. I needed breaks. Self care was so 0:24:20.836 --> 0:24:23.596 minimal during that time. Mike and I both lost so 0:24:23.676 --> 0:24:28.996 much weight. Were felt like we were wasting away. We 0:24:28.996 --> 0:24:32.956 were so sleep deprived. We were so sleep deprived. We 0:24:32.956 --> 0:24:38.276 were giving him medicine around the clock through his feeding tube, 0:24:38.436 --> 0:24:42.436 and so I couldn't be around him all the time. 0:24:43.996 --> 0:24:46.436 And sometimes that's really painful to reflect on, like did 0:24:46.436 --> 0:24:48.756 I spend enough time with him? And then I have 0:24:48.836 --> 0:24:51.796 to remember that my survival felt like it depended on 0:24:53.236 --> 0:24:54.716 having some moments of distance. 0:24:54.876 --> 0:24:58.276 Yeah, And the quality of your interactions with him was 0:24:58.316 --> 0:25:03.956 of paramount importance. If he saw you in this intense 0:25:03.996 --> 0:25:06.356 state of despair and grief all the time because you 0:25:06.356 --> 0:25:10.236 weren't taking moments to break, was that of service to him? 0:25:10.516 --> 0:25:11.196 Almost certainly? 0:25:11.276 --> 0:25:12.116 Not right? 0:25:12.196 --> 0:25:15.916 And there was always going to be a trade off. Yep, 0:25:20.396 --> 0:25:22.636 we'll be back in a moment with a slight change 0:25:22.636 --> 0:25:48.276 of plans. As theo's cancer progressed, Ali and her husband 0:25:48.316 --> 0:25:51.036 Mike did their best to adjust to their new reality, 0:25:51.676 --> 0:25:56.156 but their differing responses to Theo's illness straining their marriage. 0:25:56.716 --> 0:26:00.796 In the beginning, we were very aligned. Neither of us 0:26:00.876 --> 0:26:04.116 had any information about DIPG. This is the kind of 0:26:04.116 --> 0:26:07.236 tumor that he had, so we were just going off 0:26:07.316 --> 0:26:14.276