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Caregiver Stories: What My Daughter's Disability Taught Me About Living with Evan Rosenblum · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone, welcome back to the Inchstones podcast. You know I love me a good dad in the special needs world and I am so thankful that I my orbit collapsed or collided. Excuse me. With Evan Rosenblum. It is phenomenal to have him here on the show today on Inchstones to share his journey as a specialty dad to his daughter Sydney and the meaning, the change, the transformation of what Sidney's being in this world and how it's impacted him. Evan, thank you so much for being here today on Inchstones My pleasure.
• 0:29
  Speaker B: Thank you for having me on.
• 0:30
  Speaker A: Before we pressed record, you know, we were laughing about, you know, just the trajectory of this life and small wins of what I call Inchstones take us back. You said that it taken you a good bit to get to the place that you're in right now. What does that mean? What does that mean for Evan today versus when you and your family were experiencing Sidney coming into this world and her diagnosis?
• 0:50
  Speaker B: Yeah. So Sidney is severely disabled. I mean if you look at her on paper, she is, you know, just going to say she know she is what many would consider like worst case scenario as far as like diagnosis. And you know, when you look at her chart goes, she's severe cerebral palsy, bilateral pvl, which means brain damage. If you look at her brain scan, one doctor explained it this way, they're like, it looks like a shotgun blast through her brain. There's just holes all over it. She had a traumatic brain injury when she was six weeks old. She had something called a necrotizing endocolitis, which is a really nasty infection in her gut. When she was still in the, the, the nicu. And most infants that get that while in the NICU unfortunately pass away within like 24, 48 hours. She had emergency surgery. They were able to remove a third of her gut. But we believe that she suffered a traumatic brain injury during that surgery which led to the brain damage. And then at a year old she had, she said something called infantile spasms, which is a really bad situation again. So she's had, she's run the gamut. She had a heart surgery, she's had lungs stuff. I mean, so now you know, she is non verbal, she's non ambulatory. And like I said on paper, it's, it's really bad. But she's the best, she is the best person in the whole wide world. She is, she has this unbelievable personality. She's funny, she is, she loves music, she loves to dance, she's naughty, she's, she, she's exciting, she's dangerous. She loves. She's a thrill seeker. She's smart. She. She's social. She's a risk taker. I mean, she's everything. She's an am. She's my. She's my best friend in the world. We eat. Like, she loves to go eat. She loves steak, she loves ribs, she loves chocolate. She's super opinionated. And she is the absolute best.
• 2:37
  Speaker A: It's.
• 2:37
  Speaker B: You know, another dad of a severely disabled little girl once said to me that the first five years after his daughter was born, it felt like in an action movie when a bomb goes off and the main character is just completely discombobulated and you hear that ringing in your ears and you just kind of look around and you're like, what is going on? And eventually the ringing stops and you can kind of stop and kind of figure out what's going on. You get your beari. Like, okay, it's time to move forward.
• 3:00
  Speaker A: Yes.
• 3:01
  Speaker B: That was like, the first five years for me. Just, like, what is happening? You're moving forward because you feel like you have to and you're supposed to, but you have no idea what you're doing.
• 3:12
  Speaker A: Well, also, too. I mean, like, time, you know, I know. It's a social construction, all these things. It's amazing, though, when time just keeps going. It's just like anything with what I compared to, like, the grief timeline or anything, you can't slow down time. Time is going to march on, and it is the only constant. And it is wildly disorienting when you're going, whoa, whoa, who? Oh, nope, nope, nope, I don't want to. Nope. I'm not ready to keep going because I need to just, like, get my bearings and that does. It was years. Years.
• 3:39
  Speaker B: Yeah. I mean, and you don't. You don't prepare for it. I mean, the day that Sidney was born. Oh, let's go back to the beginning. My wife was 25 weeks pregnant. Her name is Samantha, and she was 25 weeks pregnant. And she was like, ah, something's off. And we went to the hospital, and it just escalated super quickly. They, you know, did the thing where they. They took her blood pressure and they looked at each other and they're like, you know, they did that thing where they were kind of giving each other, like, nonverbal, like.
• 4:03
  Speaker A: And you're like, bad.
• 4:04
  Speaker B: Yeah. And I'm like, what's going on here? And minutes, you know, later, it was escalating so quickly that it went from, we need to get somebody else in here. Let's get somebody else in here to, like. All of a sudden, somebody had me on the side and were like, hey, do you have any family in the area? You should probably call somebody because this is bad. And I was like, what do you mean bad? And somebody said this to me. They said, your wife is. Is in danger, and your. Your baby is in danger, and this could go real sideways. Actually, the way that they said it to me was that both of them could die. And again, this was, like, on a random Sunday. And I was like. I was drinking the night before. I was like.
• 4:38
  Speaker A: Exactly.
• 4:39
  Speaker B: And so, like, all of a sudden, I had to prepare for, like, real life where, like, the doctor's telling me that, like, your wife and your kid might die, so figure out how you're gonna deal with the rest of your life today. What ended up happening was they scheduled us for a. A plan C section on the Tuesday Sidney was born. She was 25 weeks and 2 days old. They said if she shows up vigorous signs of life, will try to save her. If not, if she comes out and it's clear that she's not going to survive this, we'll go into comfort care mode and help her pass. She flung her arm and made a sound, and everybody, like, dove into action and saved her. The NICU team was right there. They sprung into action. They saved her. They, you know, they were able to save my wife. She was in the ICU for another two. Two weeks after that. So I had my wife on the second floor for two weeks.
• 5:23
  Speaker A: Yes.
• 5:24
  Speaker B: You know, intensive care unit. I have my daughter on the fourth floor in the nicu. I was going back and forth trying to figure out, like, what is going on. In those two weeks that my daughter was in the nicu. She had, like, a heart surgery. There was a lung thing going on, like.
• 5:37
  Speaker A: Yeah.
• 5:38
  Speaker B: And then my wife was finally able to come and join me on the fourth floor. I had my boss being like, hey, when are you coming back to work?
• 5:44
  Speaker A: Yeah.
• 5:45
  Speaker B: What is happening right now? I have no idea. So, like, that was, like, the first month.
• 5:50
  Speaker A: Yeah. And it's. And it's this. It's the someone once told me. It's like you have to just be where your feet are. Like, you. You can go into so many different realities at the same time. It's like our brains play tricks on us that I can only imagine where you were trying to just normalize and locate where you actually were in your body at those moments, because so many different realities were begging you to return or be there or whatever that was.
• 6:11
  Speaker B: I was trying to Grab on to, like, work. Actually, I was trying to figure out how to, like. Because work was the only, like, constant thing that I could try to. You know, it made me feel normal. Right. So, like, when I was trying to
• 6:23
  Speaker A: control the controllable work.
• 6:25
  Speaker B: Yeah. I was like, I know this is normal. I can, you know, as I was a. I was an executive producer at tmz. That's my background. Like, I helped create tmz, TMZ sports, the TV show, all that stuff. And so when I would call back into the office and I was working with my staff, like, I would. That was familiar, right? So, like, in the nicu, everything is so unfamiliar. Everything's beeping and people are talking to you, and it's like a foreign language. When people are talking about.
• 6:48
  Speaker A: I mean, it sounds like what you're saying. I mean, I. I talk about this ad nauseam. Your identity was like that. Like, I firmly. I was so similarly based in, like. No, I'm a really, really damn good New York City mom.
• 7:00
  Speaker B: Okay.
• 7:00
  Speaker A: Like, that's. We are not. We are going to go to those same story, you know, booklings, and we're going to go to Shakespeare in the Park. Like, that identity, I wanted that so bad. And so I hear that same kind of thing. It's like those shifting of the hats. You're like, no, no, no, I can do this because I can do that really well.
• 7:16
  Speaker B: Yeah.
• 7:17
  Speaker A: And that is disorienting. Whenever you want to tap into something and you realize that you are being pooled, the universe is pulling you in a way that's going to just radically likely in some ways, you know, destroy that identity for a little bit and force you into a new one.
• 7:33
  Speaker B: I had convinced myself because my daughter was in the NICU for a total of 143 days.
• 7:38
  Speaker A: Wow.
• 7:38
  Speaker B: Remember that? I'll never forget that because I am. I'm 44 years old. So I was around the pager era when we used to text PEOPLE143 for I love you.
• 7:48
  Speaker A: Oh, yeah.
• 7:49
  Speaker B: And she came out.
• 7:50
  Speaker A: I'm exactly with you.
• 7:51
  Speaker B: There you go. All right. So when she came out, keep. You know, we. My wife and I were keeping track of the days, and she came out after 143 days. And I'm like, I don't know. There's a weird connection.
• 7:59
  Speaker A: No, it definitely is. I believe in that stuff.
• 8:02
  Speaker B: So, you know, after 143 days, you know, it was four and a half months in the NICU, and I was convinced at the time that, you know, my identity was wrapped up in work and everything was, you know, if I could get back to work and I could just go back to work and get my life back on track, then all this will be normal again. I was convinced of that. But the reality of it was that my life was never going to be normal again. And then the life that I had, that was gone. It was gone. And the day that my daughter was born, it was. You know, that was. My whole life had changed. And I had before and after. I hadn't accepted it yet because I didn't know what it was going to be yet. How could I? You know, one day I just rolled. Everything was one way, and then the next day, everything was radically different. Like, raising a kid with severe disabilities is just a completely different world. And, you know, she's. My daughter's about to turn 11 years old, and it's taken me a long time to, like, really, truly understand it. And really, those first couple of years, like I was saying, I didn't really understand. I think I was kind of fighting it. I was trying to. I was trying to hold on to this life that I had and also kind of trying to come to terms with, like, what was happening, but, like, feel like where I am now, I'm in a really good place now. I've left tmz. I've been gone for six years. I feel like I'm a really good place with my career where I've kind of figured out the balancing act, and I've embraced where I am now. I'm in a great place with my daughter. I have a son. He's two years younger than my daughter, and we're in a really, really great place. And I'm at a place where I'm truly, truly, like, enjoying them, and it's great.
• 9:25
  Speaker A: That is a tough trajectory to hear whenever you're earlier on in the journey, because I remember looking so much to people that were ahead on this, and I was begging them for stories like that, like, tell me when this is going to settle. And they just kept saying, you have to sort of live through this and let the Every. All the details sort of dissipate to become this new normal. And, you know, I don't even know if, you know, the only constant is change, right? Like, my kids are finally, like, everything's moving. I would say, like, the train is. Is moving. The. Like, the locomotive is so, so, so strong right now. But, like, you know what? We had some really severe storms here in Jersey, and, like, sometimes, like, a. A tree's down in the tracks, and it Does. It does pull you back into that feeling of. Sometimes you don't realize how even within atypical life you get to a new normal, that something then derails it too. And that's been like, a constant thread that I know a lot of guests have talked about with me, is that it does still have an ebb and flow to it because of the nature of a. Of a diagnosis like these that. That are life altering.
• 10:23
  Speaker B: Yeah. Yes. There was a. There was a moment where it was kind of a wake up call where I had gone back to work and I had forced myself to go back to work. And I got a call from the hospital that something radical had happened with my daughter's care, and they were concerned that she could die at any moment. And I remember thinking to myself, like, I can't believe I had gone back to work. And I remember I raced back to my car and I was trying to drive back to the hospital. And I just kept thinking the whole time, like, I can't believe I went back to work when she was still in such a state where, like, this was even possible. And, like, if she were to die and I was in the office, like, I don't know, how would I forgive myself? And, like, that was a real, like, awakening moment for me where I was like, what am I doing? Like, what choices am I making right now?
• 11:07
  Speaker A: Like, how, you know, I'm just thinking about, like, you're talking about this going back, the identity stuff, the aha moments. What do you think it is? How do you share that? Or how do we, as this population especially needs parents, share the magnitude of these aha moments of, like, making those choices and changes? Because I think something that I deeply struggle with, I try to do, and I feel like I'm growing in it, but constantly, like, how do I. How do you share when you were going through that and you're like, I have to radically change this. Like, how did you tell your employer? How did you tell your friends and family? Do you think that they ever really understand the gravity of how these choices foundationally change you as a human?
• 11:45
  Speaker B: No, because I barely understood it. I mean, so how could the people around me understand it?
• 11:49
  Speaker A: I know, but why is that? Why do you think that is?
• 11:52
  Speaker B: A couple of reasons. Number one, I think, you know, as a man, I felt, you know, when that. When we were going through all that, I felt, and maybe just me personally, but I just felt like when all of that was happening in the 143 days that we were in the NICU, in the hospital. I felt like there was so much support that were being offered to the mothers that were going through that, and there were just not a lot of resources that were being offered to the fathers. And then my job was just like, just be strong and supportive for my wife and my daughter. And so, like, I felt like that was the role that was kind of being assigned to me when I was
• 12:24
  Speaker A: head down, march on.
• 12:26
  Speaker B: Yeah. And like, just be strong for everybody else. Like, everyone else is going through it and they're allowed to be emotional and they're allowed to, like, process all this stuff and you just have to be supportive. So just like, be quiet and support them and figure out how to go back to work and get everybody's life on track and you be the rock and you figure out how to, like, you know, carry on and support the family and do all the things you need to do. Excuse me, you need to do, to like, you know, move everything forward and get everything, keep everything on the tracks here. And it wasn't until, like, maybe like a couple years later where, like, I felt like I was starting to break down because I had been doing that for so long with this mentality of, like, just stay focused and marching down this road. And like, I had. I had been going to therapy, but it wasn't. I had a moment like a couple years later where I was like, I haven't opened up about any of this and talked through, like, my emotions. I hadn't processed it because, like I was saying, it was just. I was still in that, like, moment after the bomb went off and I had it, it hadn't cleared yet. And then all of a sudden, one moment, I was like, oh, my God.
• 13:22
  Speaker A: It is like, it is like sensory overload. I mean, it's almost like sensory overload, you know? And it's so funny. Like, as an autism mom, like, I see it so much infrequently in my children, but you're absolutely right. Like, it's almost like it's too many things coming at you that, like, how could you even process it? I think that I've gone through different phases of processing my children's diagnosis. I mean, they're 11 and eight, like, years later, years, years, years later, because my daughter was getting diagnosed and I had a seven day old baby who I knew within weeks. I said, he's absolutely autistic too. And there's like this funny phase of, like, wait, I'm gonna have two like this. Like, there's no way. Like, like, someone wake me up. Like, someone, someone wake Me up from this. So I know what you mean.
• 14:02
  Speaker B: Let me ask you a question because I know, like, there's a. The sadness element, but what about the anger element for you?
• 14:08
  Speaker A: Don't think I can. I. Hmm. I guess I might have felt forms of anger. I think I was in more of a sadness and grief over the loss of what I expected life to be. I don't think I. I don't know if I've ever been deeply angry. I think I felt deep, deep sadness over my typical older daughter not having typical siblings. I felt deep grief over the. How their lives have affected family and relationships. But I don't think I felt anger. I don't think I've ever felt deep anger. And I don't know if that's good or bad, but I don't think I felt deep anger. I just think confusion, deeply, deeply confused as to how this could happen. And that's what's always rising for me. But I think that that's a complex emotion. I think that one of the things I always say is that, you know, it's all yes. And everything is yes. And there is not a single thing in this world that you experience, especially in middle age, especially as a mother or parent to children with complex medical needs, that is not deeply, deeply. Yes. And because the second, you know that, I realized that I'm still changing a pull up of an eleven and a half year old. She's looking to me and doing this little gasp that she does, which means she wants me to sing to her. And I'm singing Belle. And I'm thinking the reason that she loves Belle is because all Belle does is have her head in the book. And that's all Milly does. So it's just like it's all those. Yes. And so I. Yeah, I don't think anger. Anger hasn't been the thing, but I'll let you know if it does. Well, I mean, what about you? I mean, is that.
• 15:31
  Speaker B: It was a thing for me. I mean, anger. I was never angry at my kids, obviously. I was never angry at my wife or my family. Family or even the doctors because I always felt like everybody involved in our situation did the best they could to, you know, give us the best possible situation, including my wife, the doctors, my kids, all the therapists, everybody involved. I never pointed fingers and was like, this is your fault. You're right. None of that. Because I always felt like everybody tried and really tried the best that they could. So my, my anger came out in different ways where I would, I would kind of like misdirect my anger at people.
• 16:02
  Speaker A: Yeah, yeah. So maybe the fuse was. The fuse was shorter for things.
• 16:08
  Speaker B: I would call it like my pilot light. Right. I had a pilot light that was like on all the time and it was like, instead of like, it was like on and ready to go. So it's like, even though, like I was happy with my family and happy to be around my kids and, you know, coming to terms everything, if something set me off, like outside, it was like, didn't take that long because I was like realizing that I had this like standing anger at the situation that I hadn't really come to terms with. And if something happened and you know, if it was somebody parking in a handicap spot or something like that, or in a. And sorry.
• 16:37
  Speaker A: Right.
• 16:38
  Speaker B: I'm trying to not say that because I. The more I'm in the community, I realize that not supposed to say that and it's true, but like an accessible parking spot, I would see somebody in a spot, I'd be like, hey, man, like, you don't. You're not supposed to be there. And then if they would sass me back then, I'd be like, why don't you respect the process?
• 16:54
  Speaker A: Yeah. Okay. Yeah. Yeah. So now that I'm thinking about it, I will say this. Someone shared that after I had shared that Milly was diagnosed and you have a newborn, and I shared this with them, they said their response to me was, yeah, so and so broke her leg last week. It's been a really tough process.
• 17:13
  Speaker B: Yeah.
• 17:14
  Speaker A: I will tell you, I remember being like, hell no. Like, like Teresa Jude, I slipped the table over. Like, you are not going to compare a broken bone that's going to heal to a lifelong diagnosis. But that's maybe the, maybe the anger of, at the, at the macro level became for me, okay. I no longer res in a typical parenting world, full stop. And that ang those anger points now just sort of beat off maybe a little bit easier. But I think maybe that's, maybe that's where my anger was, was that, you know, how dare you compare this to a typical developing thing that is so painfully typical. And I'm sure, I don't know if you feel this way like having your son, having my older daughter. There are things As a 13 year old girl, you know, in central Jersey that she's experiencing that, you know, her friends, parents and I that are good friends of mine, they'll say, oh my God, like, here we go. You know, XYZ is happening. And I think, how lucky are we to experience that this Was supposed to happen. This is, this is on. We are like 3, 2, 1. Yep. Talking about boys in the 8th grade dance like that's supposed to happen. So let's not get our panties in a wad over the fact that this is happening. This is beautiful. This is happening. They should be pushing us away. They should be really, really annoyed that we took something of theirs that, you know, they took something like that should happen. So typical parenting. I think that was probably my anchor point. Now I see it so differently. I'm so. Thank. So full of gratitude to get to experience both.
• 18:36
  Speaker B: Yes, yeah, same. And the other thing that I, that I. That's become a thing that I'm starting to realize more with it, with having a typical son and, you know, a daughter with severe disabilities is that my son, who is amazing. My son is great. He's such an amazing kid. But the way that he views the world as the younger sibling of, you know, an older sister with. There was a moment where I realized, like, the way that she hurt her normal is the way that he thinks, like, the world should be. And there was a moment where like, he was like, he would always ask me to like, carry him out of the bath.
• 19:13
  Speaker A: Yeah.
• 19:14
  Speaker B: Walk out of the bath, go to your room, be like, how come you can't feed me cereal in the morning? I'm like, what are you talking about? Well, you feed Sydney. Okay, but you can feed yourself. And then finally, like, occurred to me, it's like he thinks this is the way, this is normal. And I'm not treating him normally. Yes, less than. Because she gets carried everywhere, bathed, treated all the. And he's not getting all that. So he thinks like, he's getting treated
• 19:39
  Speaker A: like, like he has a lesser experience than she does. Right, right. Well, you think about that. I mean, from a developmental point of view, it's so physical, you know, for, for kids, like again, even the reverse. I'll catch my 13 year old daughter saying, I know and I know. It's like I'm running around, you know, bathing the younger two and doing all that. And it's like she didn't pick up her basketball. And it's like, can you fill out my, my, my, my, my Stanley cup? Right. And I had to think to myself, what I. And I don't know if you say this or your wife does too. I'll say consciously out loud. Hey, Milly I need to go fill up your sister's water bottle for basketball. You're gonna have to wait here for a moment because I want her to hear you're important, too. You're right. You can absolutely do that on your own. But you know what? I'm gonna press pause so that you see me pressing pause, and they're gonna be fine. I mean, there might be a urination accident or something, but, you know, we just. That's just, Just. That's just fluid around here. That's not even, like. It's not even anything at this point. But that's. But I wonder if that's similar to your son, is that it's like, notice me just because I don't know any different.
• 20:38
  Speaker B: Yeah. And we, you know, we try to make a point to give him, you know, as much extra attention and explain. We try to overly communicate with him about everything. You know, we don't want him to sit and, you know, go back to his room and think about, like, go down these weird.
• 20:52
  Speaker A: Oh, yes.
• 20:53
  Speaker B: Pass about, like, why? No, really try to. And he would say, you know, every time you have a question about, let's talk it out. Let's try to have these communications, have these conversations anytime you feel, you know, a certain way about this and that. And we feel like that's been good and healthy about everything. And the older he's eight now, and the older he gets, the more questions are going to come up. And he's starting to ask more questions about Sidney, which is totally normal and healthy, and it's been great. And I feel like we're. It's. It's. It's an interesting experience raising him alongside her. It's different than the way I was raised because I didn't have anybody in my family, immediate or extended, with, like, zigzag.
• 21:30
  Speaker A: Yeah. Yeah, it's. Yeah, they will, as I follow and I always say, standing on the shoulders of giants of, like, older. Hey, Alexa, stop. Older. Some older mother advocates that have children with severe autism that are in their 20s and, you know, late 20s now. Young adults living, you know, in group homes or independently with aids. I ask so often, what's your daughter doing? What's your other son doing? And. And when I hear these things that these other siblings are doing, I mean, you want to talk about me getting choked up? Like, I just. They have. Your son and my oldest are experiencing something that is just so unique. And they're. They're not unique on a. On the broad scale of things, but they are very unique in probably their communities. And I really do wonder what is being transformed in them because of all these small moments that their typical peers are just not experiencing. And it's. It just it's, it's honestly, it's so damn beautiful, but it's heartbreaking at the same time.
• 22:25
  Speaker B: Yeah, but you know what's great? We went to a home this weekend of another kid who had, who has severe disabilities and he, he's deaf and he's got, you know, he's non verbal and he's got a lot of other things that are similar to Sydney, maybe worse in some areas and better than others. But in a situation where, you know, he's visibly to other kids that are in his age range from like let's say 8 to 12, a lot of kids who are typical who don't have exposure to kids like him. I've seen it with Sydney where a lot of kids go, what's going on? You maybe a little hesitant to engage where my son, they get in the, he gets in the pool with this kid and he's splashing him in the face and he's treating him just like he treats his sister. And the parents of this kid loved it. And I just, I loved it too because it's just like, you know what Bennett, my son is treating this kid like any other kid. And I think that's what I would want for my daughter. And I think that's what these parents want for their son. And it's the best situation because that's, that's all we really want. We just want our kids to be able to just have a childhood and have friends and be treated equally and as, as know normal as they possibly
• 23:27
  Speaker A: can because they're, they're full humans. I always say there's, there's a full soul behind all these different behaviors or compositions of their body. And it's, it's never going to be, it's never going to be black and white about what they absorb, how they absorb it, how they experience it. We never will fully know exactly what they're how and how they're experiencing it. But at the same time, did you really know that when Bennett was, you know, younger too? Like I always think, like I didn't really know what my typical daughter was thinking at 4 anyways, like she was attempting to talk. So, so what is, is so you know, the conditioning and then really unconditioning yourself to sit in those moments and go, this is so incredible to see your son doing that with another child. That is that again. And it's a typical thing to do to just splash and just play and be in roughhouse in a pool.
• 24:14
  Speaker B: I loved it.
• 24:15
  Speaker A: Those are the moments that I always say are the most Deepest life luxuries that you will ever receive, you cannot purchase it. And people wish they could, right? People wish they could. They could purchase that feeling that you and your wife got to experience, you know, and hopefully, you know, I'm sure as time goes on, you'll share those moments more as your son ages of, like, what you saw in him at those younger ages, too, because it's so empower. It's so impactful.
• 24:38
  Speaker B: It's great. And I'm excited. I'm excited to see the kind of person he continues to grow into.
• 24:42
  Speaker A: That's right. That's right.
• 24:43
  Speaker B: And by the way, you know, my daughter. My daughter went to a camp this past weekend, a couple weekends ago. It's called Rad Camp, and it's a. It's a camp in Orange County, California. And it. It's. It's a sleepaway camp for kids with disabilities. And you. Sidney is one of the kids with more severe disabilities. But most of the counselors that work at this camp, when I would talk to them, they're volunteers. They're kids that go to local high schools or junior colleges or colleges around the area. But they, you know, they had somebody in their lives that had a disability, and they're there because they were touched by that person, and they're volunteering. And when I would talk to them, they want to go into a field where they work with other people with disabilities and they want to help, and it was just such a beautiful thing, and it was so inspiring. And when you see people like Bennett or, you know, your. Your kids or other families like this, it's like, it's great. It's such a beautiful. You know, it makes. It gives you hope for the world.
• 25:28
  Speaker A: You know, we're. We're supposed again. And this is why I was so drawn to your story. And when I found your substack originally, is that there's a lot of isolation in the general population of severe disability families that have children with severe disabilities. Because, like. And like we said before, I press record. Like, it's. It takes 30,000 times more mitochondria mitochondrial energy for me to, like, fly to Florida like I did last week. And I think about that all the time of, like, why do I do this? I do it because they're deserving of it. Just like my older daughter is of wanting to get her Brazilian bronze tanner thing out and whatever. Like, they're deserving of getting to Florida and splashing in pep and grandma's pool. They are deserving of that.
• 26:07
  Speaker B: That's true.
• 26:08
  Speaker A: And it's going to take a ton much longer. And I think that by getting out into the world, and that's what I loved when I saw your post, is that if we don't engage, there's no way that we're going to change and wear the identity that has been given to us as a special needs parent. And if you isolate, it's just like water. I don't know if you're. I'm. I'm. You know, I have a deep philosophical side to me. I love the work of Bruce Lee. And I've been reading his, his. I've been right. Reading his daughter's book called Be Like Water. Yep. And it's just. It's so incredible because it just says, you know, you're not supposed to stay stagnant. No living thing is supposed to stay stagnant. It will decay, it will get moldy, it will get decrepit. So we have to keep moving. And I think that that's one of the things that again, I saw. So immediately I was like, oh, this guy gets it. So how do you and your wife keep that mindset of, like, we're gonna get out there, we're gonna create the army, we're gonna keep moving? Where did that come from? And was that always who you were or you and your wife? Or was that. Did that happen because of Sydney?
• 27:06
  Speaker B: You know, my wife is. She's. She's the best. She's a very active.
• 27:12
  Speaker A: She.
• 27:12
  Speaker B: She's not a person who likes to sit around. And she's always been like, one to go out. She likes adventures. She's the one pushing us to go out and do stuff. So she's. She's an amazing person. But, you know, Sydney loves. She takes after my wife like that, right. She's. She's not a wallflower.
• 27:26
  Speaker A: She.
• 27:26
  Speaker B: She's such a social butterfly. She likes to meet new people. She likes to try new things. She wants to go out. She wants to be a part of everything. And it's like, when. How can you look at your daughter and. And she's. She wants you so desperately, wants to be a part of all these things and not, you know, get. Get for the world. So when she's asking for signaling that she wants these things, Sam and I are just like, all right, whatever you want, we're going to do it. Even if it's uncomfortable for us. We're going to go out and we're going to make it happen. You know, we went to Disneyland and Sydney said she wanted to go on the roller coasters. So we figured out how to get her on the roller coasters. And, you know, we put. She went on Space Mountain. She went on the Incredicoaster, which has a loop de loop. And it scared the hell out of me, but she went on it. And after she came off, she was using her communication device again. More. More.
• 28:09
  Speaker A: Oh, I know.
• 28:10
  Speaker B: You gotta be kidding me.
• 28:11
  Speaker A: Like, okay, so you got. So I know y' all are west coast, but you gotta get to Disney World. And my son and daughter, I mean, different children, same diagnosis. My son is a nervous Nelson, two at. The kid won't even go down the slide. Like, I'm like, go ahead, buddy. Let's go. He's like, griffin, like, the death. Milly is Sydney. She goes on. Soren is at Epcot.
• 28:34
  Speaker B: Yeah.
• 28:34
  Speaker A: And then the Tower of Terror at Hollywood Studios. The video that I captured will give me joy for the rest of my living days here on Earth. It is. She is gasping. She is so damn happy. She is, like, feeling everything in her body, the senses, everything. I'm thinking, that was worth it. Whatever hundreds of dollars we just spent to go to this park, that was worth it.
• 28:53
  Speaker B: Cried when I saw Sydney surf. There's a group out here called Therap. Have you heard of.
• 28:57
  Speaker A: So we have surfer, A walk on water out here, and surfers Healing, man.
• 29:03
  Speaker B: When Cindy was born, she was. She was 1 pound, 9 ounces when she was born. Right, Right. And like, everybody who's telling you all the horrible things that she's never going to be able to do. And then we got with this group called Thera Surf, and it was a pro surfer who put her on a surfboard. And I thought when we were. We got connected, it was going to be like, oh, they're going to put
• 29:21
  Speaker A: her on the board in the water.
• 29:24
  Speaker B: No, she was bombing down these waves, like, ripping. And you should see her face. Her smiles ear to ear. She's going crazy. And then when she comes in, she's going.
• 29:35
  Speaker A: She's going more and more and more again, again, again.
• 29:37
  Speaker B: And it's like, all right, you got it, man. Whatever you want. We'll do it again.
• 29:40
  Speaker A: And it's like.
• 29:41
  Speaker B: Like I was saying to you earlier, like, on paper, her brain is a mess. Her body's, you know, wrecked all this stuff. But all she wants, like. Like, it.
• 29:47
  Speaker A: They want to live. That's like, they show us they want to live. They want to engage. And I think it is the most, like, beautiful silver lining every day, million percent. That is that as I put, you know, pants out. To have Milly Slowly get herself dressed. And that agency. I think no one in this to be how I am in July. My child. I didn't want her to be in school full year. We're supposed to be at camp with her sister. And yet she's sitting here and she's trying so darn hard to get her pants on and she's doing it and she looks up and she's. And I think, yeah, she's living. She's much more alive and in the moment, in the present moment. And to your point about, you know, as they age too, they, you know, don't, don't, don't knock an 11 year old autistic girl. She's going to become a tween too. She's going to be annoyed at mom and her sister annoys her too. And it's so amazing to be able to witness it through a set of eyes like we do because of what they present as. And it just is who they are.
• 30:41
  Speaker B: She is my, my daughter, my best friend, you know, we. She's amazing and she's. I couldn't imagine my life, I was telling you before we started, you know, I couldn't imagine my life without. It's. It's like I said at the be at the beginning when she was born, I, I didn't. It just happened right forward. It's not like we saw this coming for a couple of months and we had a chance to, you know, come to terms with it and talk about it and try to prepare ourselves. One day it happened and you're just in it and it's like your life's changed, figure this out and it's taken a while and if anybody's going through this and they're listening to it, like I understand, I, I understand, I get it. And there's going to be people that tell you like everything happens for a reason and all that stuff. And it's like I, I didn't want to hear that. They're going to send you the. I know that you had an amazing woman on who was saying everybody send you the welcome to Holland poem.
• 31:22
  Speaker A: And she's right.
• 31:23
  Speaker B: A million percent right. Like I didn't want to hear that and I wasn't ready for it 11 years into it. I understand the beauty of it. I was not ready for it when I was in the NICU at all. Don't send that. But like you just, you just said it's, it's. You got to live in the present. You got to take it day by day. You got to try and figure out, like how to appre the moment when you're in the moment. And then eventually you'll get to the, you'll get to this.
• 31:44
  Speaker A: Well, the interesting part is that every philosophy of the world, every religion, every great theologian, what do they always say? It's like the power of now stay in the present, do the next right thing. And it's like what a gift to be given this tiny human that you are in charge of to raise that actually allows you to do that. Right. Evan, thank you so much for being here and sharing your family story. It is, it's palpable how much you love your kids.
• 32:11
  Speaker B: Thank you. I love it every day. I'm so grateful for it. Well, I'm grateful for you. Thank you for having me on. I really appreciate this was a great conversation.
• 32:17
  Speaker A: Oh my gosh, it's my pleasure. I, I, there's nothing that gives me more greater joy than sharing one on one stories of caregivers in both the, the trenches, the peaks, the valleys and everything in between. Because I firmly believe that we are all like living like with such intensity that if we don't slow down to have one on one connection, we will lose out out on a lot of the deep meaning that we are given because of these kids. So thank you for sharing your story today and I will be sure to share your substack here with everyone listeners on the episode summary. And Evan, thank you again for being here today on Inchstones I appreciate it.
• 32:50
  Speaker B: I can't believe we talked about Bruce Lee too. That's awesome.
• 32:52
  Speaker A: That's right. That's right. All right everyone, until next time here on the Inchstones podcast,