Against All Odds Podcast, The Less than 1% Chance with Maria Aponte
Maria highlights stories of people that have been the "less than 1% chance" and have come out of their situations thriving and seeing life as happening FOR them and not TO them! Inspiring and empowering stories that will show you that against all odds you can make it through anything!
Against All Odds Podcast, The Less than 1% Chance with Maria Aponte
A Father's Journey of Resilience and Healing with Jason Tuttle
What if the most heart-wrenching moments of your life could fuel a movement of healing and resilience? Jason Tuttle joins us to share his profound journey through parenthood, grief, and emotional expression. As a stay-at-home dad navigating the challenging world of special needs parenting, Jason's candid recounting of his son Zachary's unexpected passing offers listeners a raw and heartfelt perspective on loss. His Facebook blog, Letters to Zachary, has become a beacon of support, encouraging others to break free from societal norms that often silence men's grief.
We explore the complexities of raising children with rare conditions like Eagle Barrett syndrome. Jason walks us through the arduous path of hospital visits, medical interventions, and the emotional fortitude required to care for his children. His family's experiences shine a light on the broader challenges that families of special needs children face, from managing everyday routines to confronting life's most vulnerable moments. Through stories of resilience and love, we offer a window into the strength required to navigate this unique journey.
Join us as we discuss the growth of Jason's grief support community, which has reached audiences across 46 U.S. states and 18 countries. From sharing raw emotional letters to creating a safe space for men to express their grief, Jason's platform challenges traditional perceptions and provides vital resources for those navigating their own emotional journeys. This episode emphasizes the importance of open dialogue in healing and the power of community in transforming pain into purpose.
Connect with Jason:
Website: https://letterstozachary.com/
Facebook Page: Letters to Zachary
Instagram: Letters2Zachary
Tiktok: Letters2Zachary
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Welcome back to the Against All Odds the Less Than 1% Chance Podcast with your host, Maria Aponte, where we will hear stories of incredible people thriving against all odds, and my hope is that we can all see how life is always happening for us, even when we are the less than 1% chance.
Speaker 2:Hey, hey, welcome back to Against All Odds, the Less Than 1% Chance podcast with your host, Maria Aponte. I am so, so happy to have you back listening to this episode because just you wait. I was just reading the introduction and my heart was like, oh my gosh, this is going to be so good because somebody that is so in touch with their feelings and speaking up about their feelings I feel like we all need a little bit of that in our lives because we need to learn how to be able to process our own feelings and learn how to deal with those things. So let me introduce you to Jason Tuttle.
Speaker 2:He is a parent of two kids with multiple mental and physical disabilities, some rare. He is a stay at home dad for 12 years until his son suddenly and unexpectedly passed away, with issues related to his needs, on January 28, 2022. Since his son passed, he created a Facebook blog, Letters to Zachary and a community that helps deal with grief, and he details it very raw and unfiltered and open to this. Not okay to show feelings and it's not what they grow up with. I know that for a long time, my son was told that he couldn't cry from his other side of the family and I was like what? You can cry all you want, You're open to crying and feeling and having emotions. I'm so so incredibly grateful, Jason. Welcome to Against All Odds podcast.
Speaker 3:Well, thank you for having me. It's a pleasure to be here.
Speaker 2:Yeah, absolutely so. Give us a little bit of background. I want to hear your story about your kids and then what kind of transpired from there.
Speaker 3:Okay, I am a married father of two kids, been married. I think it's 21 years this year. My wife's a couple of years older than me. We got married when I was 26. And so she's your typical New England family. She grew up in kind of the Massachusetts, Connecticut, Rhode Island area. She was a cradle Catholic, Her mother's one of eight, Her father's one of seven. And I say all this because right after we got married we waited about a year and her comment to me was I want to have four kids. And I said let's have the first one and then we'll talk. And even me, growing up, I've been in the South most of my life, although I wasn't born in the South, so I consider myself Southern. And so even I at the time was just like. I figured we'd probably have two or three. Kind of the traditional kind of family dynamic is where I was thinking. But when she said that, I was just like let's have the first one, let's see what happens.
Speaker 3:Because at that point in time we didn't think like twins or multiples, ran in either side of the family and, lord, if we'd, she'd have given birth and we'd had twins or triplets, it had been done at that point. So at about a year in, we decided that we wanted to have a child. She got pregnant rather quickly, to our surprise, and we went through just the motions in the beginning and it was ironically it was her hairdresser that she went to go get her hair done. She hadn't told anybody, we hadn't taken a test, and it was her hairdresser that went you look green, are you pregnant? And she went and took a test and sure enough, she was pregnant.
Speaker 2:Oh my gosh, that is awesome. Hairdressers are pretty amazing. They know us better than we know us sometimes.
Speaker 3:So she calls me and tells me the information and I'm excited and she I'll never forget it she goes well, what if we have a child that's got like medical needs? And my response was well, what if we have a child that's got like medical needs? And my response was well, if we have one with medical needs and we're just going to have one with medical needs? I'm not I've never been a big proponent of kind of the alternate, alternative birth control methods that are out there that people might use in that instance. So she went through a pregnancy. We got to that like week 20 appointment, which all women know is where you find out the sex of the child.
Speaker 3:so she didn't want to know because that was one of life's last great surprises yeah I wanted to know because I'm a planner, I was painting the nursery and I really just didn't want to paint in browns and yellows and greens and that kind of thing. So we got to the ultrasound appointment and we playfully went back and forth about what we wanted to do and the tech said well, I'm getting to the point that I'm going to find out the sex of the child. Do you want to know? And so we playfully go back and forth and in hindsight the tech probably shouldn't have said it the way she did, but she did. She goes well, I found an issue and I need to know the sex of the child. And so we go okay, we want to know you're having a boy? Great, what's the issue? She said well, I can't really tell you the issue. She said that's a kind of a doctor thing. But I said well, why did you need to know the sex of the child? And she goes well, if it's what I think it is, it's rare in boys and even rarer in girls. So I needed to know the sex of the child, and so we said okay, well, from that point forward we started seeing a perinatologist, which, if you don't know what a perinatologist is, it's basically a high risk pregnancy.
Speaker 3:Obgyn is what that doctor does. They look at all the specific things that could possibly happen when there's a concern for other issues. So we started seeing that doctor every week up until my wife's C-section, and what we learned in that process is you run across two doctors. You either run across a doctor that doesn't want to tell you anything for fear they're going to get sued if they're wrong, or you run across a doctor that wants to tell you everything under the sun so that they can cover themselves, so that you don't sue them. And I told the doctor. I said, buddy, we don't know everything about medical science. If you say something and it doesn't happen, or even if it does happen, I'm not going to sue you.
Speaker 3:So they told us a lot of really major things of like this is our first child, we've only been married a year and we're here and well, your son may only be born with one kidney. That one kidney looks like it may sustain damage in utero, which that did happen. Your son may have areas of missing white matter in his brain that did happen. Your son may have hydrocephalus, which is water on the brain, which is not a good thing, and he may need a shunt to help drain it. Luckily that did not happen. So they told us some pretty major things that was going on. That was just shocking us because up to the week 20 point, we had no reason to believe there were any issues on either side of the family for generations. Nothing that wasn't self-induced, if you will.
Speaker 3:And so we get to the point where my wife's going into labor, and so we take her to the hospital. She gets induced for her C-section, like the typical scenario for a C-section. She has the child, they wrap our son up, they bring him over to us, we see him for about 30 seconds and then, for us, they whisk him off to the NICU at that hospital. And then my wife had to go to recovery because the epidural kind of made her not feel well after, which is pretty common. And so I then went up to the NICU there and the doctor comes up to me and goes well, your son was born with a rare condition called Eagle Barrett syndrome. And I went what, what is that? And he said, well, what, what is that? And he said well, what's going to happen is we'll have your son overnight and then he's going to get transported to the children's hospital on the North side of Atlanta, Cause I'm on the Southwest side at this point of Atlanta. And so I said okay, and I said, well, will they take my son to see my wife? Cause she really didn't see him, and I said I'm not going to let my son leave this hospital, for my wife actually has a chance to see him. And so he said yeah, that should be fine and the children's hospital was great.
Speaker 3:But to backtrack a little bit, eagle Barrett syndrome is a rare condition. It's one in 40,000 births. They don't know the official cause of it. They know it's related to kidney issues, which my son was only born with one kidney. That one kidney did sustain damage because your kidney is basically a filter and what was happening was his kidney wasn't filtering right, so fluid was backing up into the kidney is what was happening. So on the ultrasound, millimeters may not sound like a lot, but when you see a black spot that looks about that big on a ultrasound thing and you may think, well, 10 centimeters, 10 millimeters, isn't that big, but it's massive. So the Eagle Barrett syndrome is related to kidney issues. On top of that, the characteristics of the condition are a child has an abnormally large bladder that has to be given a catheter, which I had to do every four hours for about the first five years of his life, because they don't get the necessarily the sensation to have to go.
Speaker 3:And so I would have to constantly feel his bladder area to make sure it wasn't getting like rock hard, tight, like he was getting too full On top of that if I didn't drain it. The reason why people get urinary tract infections because the sediment in the liquid there just sits there and that's what causes the infection. Yeah.
Speaker 3:So I would have to give him a catheter for that. The main characteristic of it is prune belly. Well, it's Eagle Barrett syndrome, but it's affectionately known as prune belly. The main characteristic of the condition was he was born without any core abdominal muscle. He had none in his midsection. Like I could lay him on the floor and the only thing protecting his organs was the skin and the fascia that held the skin together. Like I could put him on the floor and I could literally, from his outside, touch his large intestine, touch his lower intestine, touch all the organs that are right there. And so he was. He did have to wear a protective covering for a while, although later on down the road we did have a major kind of reconstruction surgery that really helped out. So he had no, no core abdominal muscle. He had normal lungs. However, he had a diminished lung capacity. What I mean by that is like when you and I get like a bronchitis or pneumonia, when you have the core abdominal muscles, you've got that like foundation that your system presses on to give you kind of some force to push it out. Well, he didn't have that.
Speaker 3:So what we later found out was if I didn't catch a respiratory related illness fast enough. Ultimately, I was taking him up to the hospital, we were going to the ER, he was getting admitted and we were staying seven to 12 days. Every time that happened and that happened probably every six months for the first five years of his life is what happened. So when we found out about all that, we started seeing a pulmonologist, and so at that point, the protocol that I had in my head was the moment I heard that cough, that I knew that he had, I put a Hill-Rom vest machine around his midsection which basically blows in and out. It beats on your chest to loosen things up. Then I take an encephalator, which is basically an oxygen mask that goes over your mouth and your nose. It blows air in quickly and immediately sucks it out. So what it does is it gets it from your lungs and sucks it up into your esophagus. I then take a suction machine with a tube in there and stick it literally down his throat and suction it out, and then after that everybody knows what a nebulizer is I give him a breathing treatment through a nebulizer, and that's what I did every four hours every time he got sick, until we had the reconstruction surgery and at that point he got well. I was more proactive at that point and he got. I got better at noticing it. So he his hospital stays at that point drastically dropped, but for at least that first five or six years that's what I did.
Speaker 3:So all of those things is just the Eagle Barrett syndrome. On top of that, he was born with neurological delays. What that meant was, even though when he passed away he was 15 years old, he functioned at about four to six years old his entire life. On top of that he was nonverbal, he was epileptic. So of the six different kinds of seizures he had two different kinds of them.
Speaker 3:He could walk with assistance, like me holding me holding him but by himself he could not walk. So he was essentially wheelchair bound. However, when I'd put him on the floor he could army, crawl fast as anything anywhere he wanted to go. So mobility wasn't the biggest issue. But like walking, yeah, he had to have a wheelchair. So the Eagle Barrett syndrome is completely separate from all the other issues I just listed, and that does not even include all the issues my daughter had two years later. Oh my gosh. So that's the first up until my daughter was born and we found out about her issues. That was probably the introduction to the first three years of marriage, the first three years of my kids the special needs life, the hospital life. So that's what we did about the first three years, just learning the ins and outs of everything.
Speaker 2:Wow. So I have to say that congratulations to a 21 year marriage.
Speaker 2:Thank you that congratulations to a 21 year marriage. Thank you, because that is a lot of stress to put on a new newlywed couple. And and congratulations to you for stepping up and and being like no, I have to learn how to figure this out and that that is rare. I was a single mom for many years and it's so it.
Speaker 2:I found it so hard sometimes to like pull, like I would always explain everything to dad, but it was so difficult to for him to step up and be like All right, well, she's having a. My oldest was diagnosed with a mental health disorder, like at 12 years old, and when she would have her like big outburst, I would call and he would be like Okay, call me, call, let her have her call me when she's calmed down and you're like at that point I think I got it, thanks, yeah. So I commend you for being a father that stepped up to that as well. Again, coming just from a mom that kind of had to deal with all of it herself, that is such a blessing and, yeah, thank you for well and we had talked initially in our marriage, I was always the one that was going to stay at home.
Speaker 3:I've been told all my life about how well I work with kids, and a lot of it just comes with the old adage kids and animals can sense fear, yeah, and so the calmer you are around those two entities, the easier it is to work with them. Now, that's to say with little children. When it comes to teenagers, that's a whole different ball game. So it was always me that was going to stay at home. In fact, my degrees in element, well, it's in physical education, but I taught elementary physical education for nine years. So I was always I joke with people the reason why I got into elementary PE was because that was probably how my mind operated, that's how I thought.
Speaker 3:And when everything happened, I just I was teaching in a school in the middle of a year and it was just to the point that I was out. I'd used up all my personal time, I'd used up my paid time off, all my leave, and I was working essentially for free. And so I called my wife one day from work and I said we talked about this. I said do you want to do this and she said well, it's the old adage If you wait till you're prepared for it, you're never going to be prepared for it. So I literally called her on a Wednesday. That Friday I had my resignation on my teacher's, on my principal's desk, and we started from that point and I there was 12 years of it from that point is how it went.
Speaker 2:Wow. And so your daughter was born. You said three years later, three years later, two years, almost to the day, oh, wow, okay, yeah.
Speaker 3:And then she you said she also has her conditions. She does, she has, she has everything her brother did except for the rare condition. So she had severe neurological delays. Even though she's 16, she functions about four to six years old. She's nonverbal, she's epileptic, she's in a wheelchair, she can walk assisted but she's got to have the wheelchair. In fact, between my two kids, of the six different kinds of seizures, I've seen four of them in my house. Wow, I've seen almost all of them in my house. So you can imagine we had our son and then two years later we have our daughter and then about six months after that we had an OT in our house that was assessing my son and she had an intern with her and the main OT goes do you mind if I let my intern do the Peabody skills assessment test on your daughter as practice? And I said, sure, I know what that test runs. It's like a $700 test. I went. If you want to practice for free, have at it.
Speaker 3:I would love for you to do it, and so she does, and she gets done with it and she goes. What's, in my professional opinion, that your daughter's delayed Now? I will admit at that point I did not have the best reaction to her when she said that, because I just had so much going on for lack of better ways to say it. I looked at her and I literally said pack up your ass and get out of my house is what I just. I did not want to hear it at that point. It was just, it was one of those, it was a sucker punch.
Speaker 2:Yeah, it's like overwhelming. You're already overwhelmed with all of the things that you're doing with your son and you're like this our daughter, it's good, it's all good.
Speaker 3:And then it's like it was it it, it and she was considered the normal child, if you will. And our pediatrician actually has a child with needs, and so we took our daughter in and said everything that happened, and her comment was I tend to agree with occupational therapists, you may want to have her start seeing a neurologist. And she said the thing you have to understand is if you're basing your daughter's development on your son, she's going to appear normal I said but in reality she's actually delayed, and so that's where the ball started rolling for her got it.
Speaker 2:Yeah, that's so obviously from what I'm gathering. The four kids did not happen. It was two, correct?
Speaker 3:No. And right after we had our son, when we decided we were going to have another, you can imagine the flack we got from both sides of the family saying well, you've got a child with all these needs, why would you have another? And at that point, when we decided we were going to have another, I had researched enough to find out that just about everywhere said even though your son had a rare condition and had all these issues, there's no guarantee that your daughter is going to have any of it. Yeah, little did I know later on down the road she was going to have just about all of it. Yeah.
Speaker 3:But so we went ahead and decided that we were going to have her, and that's just how it went.
Speaker 2:Yeah, you actually had the best training to be, able to care for your daughter because you grew and understood and saw so much with your son.
Speaker 2:It's funny how we get these tools in our toolbox, of like we never imagined that this is going to be something that we need ever again, and you being a teacher, that in itself like you were working with children, you were so good with them and then to take on then this responsibility of your child and their special needs and all of that.
Speaker 2:It's funny how life prepares us and I wholeheartedly believe in the saying that life happens for you and all of that. It's funny how life prepares us and I wholeheartedly believe in the saying that life happens for you and not to you. And we just have to look at the perspectives, find the blessings in those moments, and I feel this was exactly that life happening for you and although it was hard and the learning curve was there and all of the things it prepared you for, now you giving the best case scenario to your daughter and everything that you've experienced. So can you walk us through? I know this may be hard, but I know that you're open to talking about it. So what happened to your son and what happened there?
Speaker 3:Okay. So of my two kids, my son was more medically fragile than my daughter. Like, of all the hospital stays, he was in the hospital, probably 95% of it. We were always in the hospital for respiratory related illness or a seizure, something to that effect. So my typical routine when my son was around was both of my kids went to the same classroom. They were there, were in a self-contained special education classroom, like we got a lift bus that stopped stops literally in front of our house. So the typical routine was I'd get them both up in the morning, we'd get them both dressed, we'd get things going, we'd get them in their chairs. We'd send them off to school Two days before the actual event that happened. I did that morning. Everything was fine.
Speaker 3:I was a stay-at-home parent at that point, went through my normal day. They came home and typically my normal routine when they came home would be I'd get them both in, I'd get them out of their chairs. If I was giving them a bath that day, I'd go ahead and go right in to give them both of them a bath and getting them dressed in the lounge for a little while and I'd give them time to relax. All that stuff Made dinner that night Made one of my son's favorites. He ate like a horse and typically most nights what would happen would be we'd put my daughter to bed about 730 and then we would keep my son up about another hour. I love my daughter, but she can be intense at times, especially now as a teenage girl, and so there were days that my son would look at me and go I need a break. He was nonverbal, but I got really good at reading his body language and he was just like I need a break.
Speaker 3:And I'm just like buddy, I understand. And so we would put my daughter to bed and then we would bring my son into our bedroom and my wife and I would lay on the bed on both sides and we'd watch TV together and just goof off with them for about another hour. So two days before we bring them in there, everything's fine. My wife goes. We have an electric toothbrush for him, so we do that because he's got sensory issues and he likes the vibration. So she went to go brush his teeth and he threw up a little bit. We didn't think much about it, we just figured maybe we hit his gag reflex and there was something in there and something came out. Didn't think twice about it, Put him to bed and that night he was up and down literally all night, which is unusual for him. And so we get him. I let him kind of sleep in, I text his teacher, I say hey, I think my son's got a 24 hour bug. He's not feeling well. I'm going to keep him home because I don't know if it's contagious or not, so I don't spread anything to the classroom. Okay, just let me know. And so that day I get him up and I sit him in his favorite chair and I tell him all day long I go, buddy, you can take a nap. I know you're tired, I know you've been up and down all night. It's okay, he's just going to be sitting on the couch on his laptop getting some work done. He absolutely refused to do that. It was hard feeding him. He didn't really want to drink a whole lot. That kind of caught my attention at that point, but not really just because it was the first day. If it had gone multiple days I might've gone. Something's really wrong here. And so we get through the day. And then that evening I told my wife, I put him to bed the same time as his sister. He immediately got quiet and we just thought well, he's just exhausted. He was up and down. He didn't nap any today. So we get up the next morning and I, before we get my daughter up, I text his teacher and go hey, I'm going to which. That's Friday morning, I'm good. I texted his teacher and said hey, I'm going to keep my son home another day. It'll butt up into the weekend and then I'll give me two more days for him to recover from whatever. I think this is Okay, fine, See you Monday.
Speaker 3:Get my daughter off to school and then about eight, 39 o'clock that morning I walk into his bedroom and typically when I walk in there to wake him up, he'll be awake and he's excited and he's bouncing in his bed and all that. And I get in there and he's not really excited. He's awake and he turns his head and looks at me. He doesn't really bounce or anything. I think, huh, maybe he's really getting sick. And I walk over to his right side and I noticed this dark green streak coming out of his mouth and everything I've seen from medical shows and all that kind of stuff. I went well, the only thing dark green that's in your body is bile. And why is bile coming out of his mouth? I was just this is not good at all.
Speaker 3:So I get him out of bed and he's really floppy, like he can't hold himself up, like he's really sick, which that didn't really strike me, because I had a time or two in the past where that was the case, where we got admitted for like 10 days, and so I thought, well, maybe something's really going on, let me really look at this. So I get him out in the living room and I immediately go through my mental medical protocol. I feel everything out. I like I cath him just to make sure it's not a bladder issue. I barely get anything out for him. The only thing that strikes me is his midsection, who was normally pretty pliable, Like I could press on a little bit and it'd be spongy. It was rock hard, like cinder block wall rock hard. And I'm just like, Hmm, this something's not right here. And I sit there and look at him for just a minute and in my head I'm playing things out. And then I look at my wife and I go you know, it's something's not right here. I'm going to take him up to the hospital and I said I don't know what it is, but I don't recognize this and this is concerning to me. And so it was at that point. It was just under our assumption that we were going to take him up to the ER. They were going to look at him. He's probably going to get admitted for several days. We'd come home. It's the mindset we were in at that point. We were in at that point.
Speaker 3:So I get him up, get him dressed, get him in his wheelchair, get him in the van and I get on the interstate. I'm doing like 90, getting up the interstate. Now I live on the Southwest side of Atlanta and the hospital we go to is on the Northeast side of Atlanta. It's approximately 65 miles from us, which sounds like a lot, but in Atlanta Atlanta is like 150 miles across. So doing 60 is nothing Like people in Atlanta say it takes. It takes an hour just to get an hour from somewhere in here. That's just how big Atlanta is.
Speaker 3:And so I'm driving up the interstate and I get into the center of Atlanta and I take the interstate that goes up to like the state road I have to get off to get to the hospital where I just get on the North center of Atlanta and I take the interstate that goes up to like the state road I have to get off to get to the hospital where I just get on the north side of Atlanta and on the road sign that lights up it says major wreck, on all lanes blocked. And in my head I don't show it to my son, but I'm just I'm freaking out because it's literally 300 yards before the exit I have to get off on like it's. We're dead stopped in the sense of like we're crawling, we're not completely stopped and we're slowly moving, kind of thing. Now, in the process of me getting up there like I can see him lift his midsection up like he's uncomfortable. And then I see him up there Like I can see him lift his midsection up like he's uncomfortable.
Speaker 3:And then I see him like he looks like he's dozing on and off and like I'm snapping my fingers at him, going buddy, stay with me, stay with me. I don't know what's going on, Just stay with me, Stay awake. Kind of like if you get a concussion, you don't want to fall asleep right after it because of just what could happen. And so after the fact, when I go back and look on it, I'm realizing that he's fading in and out of consciousness. Is what is coming? It's not he's falling asleep, it's whatever's affecting him is really affecting him at this point. So I finally get to the front of the thing and I don't know if the DOT worker flags me on, but I punch it, I floor it and I could see him swearing at me in the in the background Like he doesn't know what's going on in my van.
Speaker 3:So I get up to the hospital, I get him, I get up to the parking deck, I get him out and he's really floppy, like to the point. I notice it and I'm just like, ooh, something's really not right. I get up into the ER and, like a lot of ERs, you've got a line you've got to go through, and so I skipped the line to go to the front desk and the security guard comes over to me as if to yell at me like you need to get in line. And when he walks over to me I go I don't think he's breathing, I need help now. And he immediately changes his tone. He snaps his fingers at the nurse at the front desk and I've been in this hospital a hundred times and this is the first time I have ever at a full run ran into the ER back to a trauma room as fast as we could get there. So we get them in the trauma room. I've been in a hospital enough to know what kind of the almost procedure is. So I immediately unstrap him from his wheelchair, I take him out, I put him on the table that's there, and I back out of the way in hopes that they'll let me stay in there because one he's nonverbal and he can't talk to him and I know what's going on to tell the doctors what's going on.
Speaker 3:And so it just so happens that there's another trauma room with a door to the side that's open and they're just like just stand, you can stay, just stand right there, fine, no problem. They immediately cut off all of his clothing and they immediately start chest compressions on them right there. And the one thing that caught my attention is no more than he got put on the table. They took this drill and I later found out it was some kind of port they would put in like to immediately get like medications in them and they like drill it into his knee. Just most normal people, without any pain medication, would have come off a table because it would have been just intensely painful. He never flinched.
Speaker 3:And so I back off into this room. Like 30 people out of nowhere come in there, they start chest compressions, they immediately intubate him, which is putting the tube down his throat. And so I'm off in this room watching from the side and the head ER doc comes over to me and goes to the down to the minute, to the best of your recollection. How long has he been this way? And I told her and she goes, okay, she goes over and barks orders at him and then she comes back and she goes explain to me the symptoms and reasons as to why you brought him up here like this. And I told her everything and she went back and barked orders at him.
Speaker 3:They started doing some things.
Speaker 3:Now, mind you, this whole time they're doing chest compressions and CPR on them At this point.
Speaker 3:It's about 10 continuous minutes at this point and so they continue to do it and then they decide they're going to get the paddles out. Now, in olden times they were the big people where they put the gel on, they rub them together and they go clear kind of thing. Well, now it's like pads they put on you. It almost looks like an Xbox sitting to the side and they press a button. So they put it on them and they yell clear and they hit it and, just like the medical drama, he literally lifts off the table. I see him just convulsed because it shocks you back to life and so I see that. But I'm watching the monitor on the screen because I've watched it so many times for breathing rate and oxygen rates and it literally goes boop and goes right back to what it's doing. And even though at that point we were about 15 minutes in and they work for 30 more minutes after that, I looked at that and instinctually in my head I went he's not coming back.
Speaker 3:I just I knew and the emotion of it didn't hit me in the moment just because I was so focused on watching what they were doing and just listening to the verbiage of what they were saying, just so if I needed to recall it later I could remember it kind of thing. And so they, throughout this whole process, they shock him probably four or five times. And right after the fourth time the head ER doc comes over to me and goes we could shock him again. But she said I think the result's going to be the same. Would you like us to shock him again? And I said well, I know a lot about his medical issues, but this is out of my wheelhouse. If you think it's professionally necessary, go for it. And so they do. And nothing happens. And she immediately pronounces them, right then and there.
Speaker 3:And so, as you can imagine, I turn and I go and have a moment in the room I'm in and I regain composure and in my head I'm just like at this moment I've just got to compartmentalize this, because so I then my wife was working at home for a major company remotely, and I called her and I to this day we'll never forget the sound she made when she thought we were going up there for just a general illness and I had to tell son was dead on a table, and then I then had to.
Speaker 3:I called my mother, who watched them for years, and said the same thing. I'll never forget the response she made. Now she later, my mother later, came back and told me she goes. The one thing that struck me in that moment was you were eerily calm, like almost stoically calm, and you had just lost your son. And I said well, I had to be in that moment because one I had to remain strong, if you will, because I had to tell Jennifer, I had to tell you, I had to talk to all the care team people, I had to figure out what was going on, what the next steps were, and so in like action, mode, going on what the next steps were, and I so you were in like action mode?
Speaker 2:Yeah, I was Like I have to just I have to keep my head down and do the things that I know I need to get done before anything can come out.
Speaker 3:Yep. And so I'm sitting there, I regained my composure, the care team that she offers her condolences and I look right at her and I go this is going to sound cold and callous and I don't mean it to be, but I have to be this way in this moment. And I pointed my son, I said I will deal with this in a minute. I need to know answers to several questions. And she goes okay, what are your questions? And I rapid fire off about 10 questions, like she literally takes a step back. I go what happens from here? How long will he be in this room? When will he go to the morgue? When will the coroner see him? Will you do an autopsy? If you do do an autopsy, what's the turnaround time? If you don't do an autopsy, what's the protocol for doing one and for not doing one? Who do I need to contact for, like for a funeral home so I can get them home, kind of thing? And I just rapid fire all the and again she like literally takes a step back and she goes well, the first thing we're going to do is I'm going to talk to the coroner. I'm going to see what his decision is on, if he's going to do an autopsy or not. Okay, fine. So she comes back and she goes. The coroner's decided he's not going to do an autopsy. And I didn't mean to come off as rude, but I literally went why? Why is he not going to do an autopsy? And I said because I want to know the protocol as to why you decide you would or would not do an autopsy. And so she goes. Well, in a children's hospital, she said there's typically three or four reasons why we would. If your son or daughter was perfectly healthy, they came in here for something like this and died, they would do an autopsy to figure out what it was, if it's criminally related, if it's drug related or if it's abuse related. Those would be the four reasons. She said but because your son has an extensive history in this hospital for all of his medical issues, he's just going to attribute it to one of his medically related issues. And I said OK, that's fine. And so the team that was there was great. She was just like we don't need this room anytime soon, spend as much time as you want. I said well, his mother's coming up. Her parents are driving her up. She said fine, you can be. She said it can't necessarily be all day, but you can. If you need a couple of hours, you can be in here, fine. And so I do that and my wife comes up and we spend probably about another hour there.
Speaker 3:And, like I tell people outside of watching my son take his last breath and watching him die, I said one of the hardest moments I had was after we decided we were going to go home. I had to get all of his cut off clothing, put it in his empty wheelchair and walk that empty wheelchair through the hospital to the parking deck, put it in the van and drive 65 miles home in dead silence. I said that was the hardest drive my wife and I ever had to make. And then, at that point, my daughter, with her delays. She didn't necessarily like she didn't know, she was at school and so when she came home she had no idea, like all she knew was when I took my son to the hospital, I left with him, I came home with him, and so now she's home and she's looking at me like where's zachary? And I did it in the most simplistic terms I could, for even though I don't think she understood, and I told her what happened.
Speaker 3:And, yes, my daughter did grieve in her own way. Was it like crying or anything? Not necessarily, but you could tell behavior wise like the absence and the loss was affecting her. So for the longest time I felt like she was angry with me, and rightfully so. I took him to the hospital but I didn't bring him home and I constantly told her I said, girl, if daddy could have brought him home, daddy would have brought him home. So we dealt with that and we did the whole funeral process. And it's true what they say you deal with the worst possible moment in your life and now you have to make a thousand decisions. So I will say I have a weird sense of humor when it comes to stress and all that. So we go into the funeral home the first day. We get information. The second day we come back and we make decisions. We decide we're going to have them cremated because it wasn't cheap. But the cheaper of the two options? And so we.
Speaker 3:So we said we're going to have him cremated. And the funeral director comes over to us and he goes. I'm required by federal law and I went stop. I said what does the US government want to know anything about my son's cremation? And he goes right back into a spill. He goes I'm required by federal law to tell you that the state in which your loved one enters the crematorium is not the exact same state that your loved one will leave the crematorium.
Speaker 3:And I looked at him and I stopped for a second and I lit in front of him my in-laws and my wife. I went who in the F thinks that you can start the process of cremation and then come back to the original state? I said do they not understand? It's very hot fire and he doesn't say anything to me, but he gives me this look of you would be amazed as to the responses. And I went. I literally looked at when I am dumbfounded that someone would think that. And not only was, it was a double-sided sheet and we literally had to initial in eight places saying that we understood fully what the cremation process was. And I went I am dumbfounded. So that was leading up actually of, and then afterwards, and then we started that beginning phase of, like everybody said, this is our new life is how that went wow, for those just listening, I lost my and not watching the video.
Speaker 2:I lost it a bit, um, because I couldn't imagine and and oh my gosh, my heart, before we started recording I said my condolences because just reading your intro, but I couldn't imagine. And how do you then go from there? How do you make that your new normal?
Speaker 3:Well, in the beginning, many of us in the grief community, you almost don't. You resist it, you fight it. The traditional male response is anger. You suppress it, you keep yourself busy is honestly what a lot of us do Now. Even between my wife and I, we grieve completely differently. She's a little more quiet and unto herself and she has her moments, whereas I'm open.
Speaker 3:There were many times right afterwards, sitting on the couch as I was on my laptop, I just it just hit me like a Mack truck and I just lost it just right in front of everybody. Now am I out that? Am I that way in public? No, am I that way at home? More so at home than I am out in public. So, at least in the beginning, it's just like the stages of grief. You really get into that whole denial that I can't believe this is real, I can't believe they're gone, I can't believe just grasping mortality, grasping the fact that the time is really finite and that you only have a certain amount of it and nobody knows how much time you have of it. And so that's the beginning stages of what you mentally deal with.
Speaker 2:Yeah, I've seen mortality in my doorstep a number of times. I've had cancer four times. I woke up from a surgery and the doctor had to take a deep breath of like a sigh of relief. So I know, that from a personal perspective, but it's just so hard to even think there's so little and I am trying to compose myself in this moment.
Speaker 3:It is moment, it is the weird, like in the beginning, outside of just the general sadness from loss, like the day that we can't. The day that it happened we came home and I walked into his room here and had to put his wheelchair in which, if you see by the name in the background, that's where I put his wheelchair that day.
Speaker 3:It has not moved since yeah and so I walked in here and it just like it hit me like a Mack truck at that moment and I like, through the funeral home they give you a fill in the blank kind of thing so they can do the obituary, and like I had a really hard time with that Cause I'm just like one. How do I write an obituary for a child that's lived 15 years, which I don't think it's been? I've lived 47 years now and I don't think that's a full life at this point. How can I write one for 15 years and then like the other things, is it's amazing? My son lived 15 years and it's 15 years is brought to what?
Speaker 1:Six paragraphs is what an obituary is how do you do that?
Speaker 3:So I had a really tough time with like some of those things. The procedural stuff is what really got to me because I was the one doing them.
Speaker 2:Yeah, yeah. After my dad passed away it was I felt like I had to pause my grief and I had to cancel all the credit cards, change the bills into my mom's name, like all of the things that, like we don't think about that have to be done and go and do the whole. One is going to be the celebration of life. One is like, what are we doing? I remember having to just like, all right, no crying right now, I just like no feeling right now. I just need to do and that is hard for someone to do for a parent or a loved one I just I can't, I couldn't imagine having to do that for my child, any of my children, and so I I commend you for your strength and for being able to get through that that.
Speaker 2:What a blessing it is. I know it sounds weird, but what a blessing to be able to say, all right, hold all the things and here we go, this is what we need to do. So how do you help others now? Because you did create a blog. Letters to Zachary, correct?
Speaker 3:Correct and how has that helped you and how do you help others?
Speaker 3:Well, I'm a researcher and, like, when things happen, I'll get on social media and, as we all know, you can find a group for anything on Facebook. So after my son had passed, I just started searching grief groups and I actually found a small one that was actually the loss of a special needs child, which I was actually surprised that I found it, and so I got into that group and I got to know the administrator of it. In fact, I'm now an administrator with her on the group of that small group and so I got to know her really well and after posting in there one day I said I've started journaling per my counselor and I said I'd like to share it. Do you mind if I share it? And she goes sure, I'd love for you to share it. She said we don't typically get a whole lot of men sharing things like this, which, for those of you that don't know most of these groups, especially group groups, it's like 95% women, there may be 5% men and of that 5% you might have half a percent.
Speaker 3:that actually is there on a regular basis that actually converses with people. So I get in there and I post my first letter and I preface it with I've written these. In the moment I do not sugarcoat, I'm unfiltered. It's raw If you can't take, you know, raw, sometimes vulgar, filled emotion, because I wrote these right when I was having a moment Scroll on I said because I'm just, I'm not going to sugarcoat it, people need to see the good, the bad and the ugly of grief to get a real picture of it. And so I posted it and no more than I posted.
Speaker 3:I got a huge response in this group and I've never been one to toot my own horn, so to speak, but like I had a woman come comment say I've never told anybody my deepest feelings as it relates to grief, and this letter right here has said exactly how I feel to the letter. And I said, well, I appreciate it. I said this has been inspired by my son and I said I'm glad I've written something that will resonate with you Outside of the fact of to this day I've still gotten. People have always said you have just the greatest analogies. You can make complex things simple based on the analogies that you write with them. And I said, well, I do appreciate it. I said, if only my first principal could see my writing now, because she used to hate, she hated my correspondence, absolutely hated it with a passion. So I did that several more times and got the same response. I got several more responses just like that, and so I had people say, well, have you ever thought about doing a book? Well, at the time I didn't have enough material, so it's just like I don't know if my brain can handle that right now. Have you ever thought about doing a podcast? I definitely know my brain can't handle that right now.
Speaker 3:And so several options came up and someone said, well, have you ever thought about doing like a Facebook page? You can list yourself as a blogger. And she said, well, at least you could copy and paste what you're doing. I said, well, I could do that. And, as a side note, I created the page honestly, out of spite, because I could never find any men in any of these groups. Now, it wasn't going to be exactly like mine, but I at least want someone in the ballpark and I could never find any men that would share, maybe to the point I was willing to share. So I made this page initially catered to just men. So I create this page and, typically, like the normal way you start one, we had 10 or 20 followers, that kind of thing.
Speaker 3:And so one day I got a wild hair and I thought, well, I'm going to start emailing some of the what I would consider the big names in grief and just ask them hey, my name is so-and-so, I'm starting this page. Can you give me some pointers on things that work for you, things that didn't work for you based on the direction I want to go? And all of them were phenomenal. What do you need help with? And so I got a lot of really big names in the grief community that said sure, if you're going to do this, you may want to do a, b and c. If you don't want to do this and you go this way, you might want to do these three things and which I used a lot of those and like my page now is completely different than what it was in the beginning yeah so I started doing that, posting my letters and all that stuff.
Speaker 3:I started doing all of that and after about the first month I started getting a lot of followers, like it was. It was getting to be like 70 and 80 followers a month. It was starting to blow up on me and typically I get a couple hundred and then it would plateau and get a couple hundred, plateau. That's how it's been the whole time. And when I was getting that response in my brain I was going well, maybe I have something here. And I was just like I don't know how I'm going to do it, but I need to keep building on it, to continue just getting the following. And like my wife said, why are you so obsessed about at least getting to a thousand followers? I said because at least when I get to a thousand followers, the probability that they will share it to. If one person from all of those thousand followers shares it to one person of all those thousands of followers, think of the exponential growth that will happen. And then I said then, like, if I try to get media to jump in on it, to like, share it in the media until you hit about a thousand followers, a lot of them will be just like you're not quite big enough, like I had a local news reporter I contacted and that was basically her comment Cause I'd caught. I had about 600 followers at that point and she didn't come out and say it, but that was her response was maybe we'll come back later, as if I could do a story, but you may be gone tomorrow. So as of today, I'm at 1,015 followers.
Speaker 3:I have representation in 46 of the 50 US states and I'm in 18 countries as the representation. I have original content in the form of letters, poetry or prose, like I quote, tweet a lot of grief stuff and give commentary on it from my perspective. I have video form. I have memes. You name it. If I can think of a media form to do, that's what I put. Video form I have memes. You name it If I can think of a media form to do.
Speaker 3:That's what I put on there. So again. But it started off for men to say, hey, this is a safe space for you to comment, to feel vulnerable. I'm not going to judge you. In fact, the rules I've listed in there I've point blank said if you're coming in here bashing anybody, male or female, on how they're feeling, you will immediately get removed.
Speaker 3:Yeah, this is not the place for that, so it started for that. However, I did have several big names say it's great that you're doing for men, but if you're trying to get a massive audience cause, there's some pages on Facebook that have 10,000 followers, 20,000, 50,000. If you're trying to get to those numbers, you're going to have to open it up. So I did so. Even though it's initially for men, I have since opened it up for anybody grieving specifically women and at least from the woman's perspective, the response I give them is from the woman's perspective.
Speaker 3:The response I give them is I'm here to give you a perspective into the male mind into how we grieve, what's expected, how we do it, and then, like I'm here, like I've had several women come up to me and say we lost our child X number of months ago or a year ago. He's not opening up. What do I need to do? And I'll go. Well, I don't know if these are 100% work, but here's some pointers I think that should help.
Speaker 3:And so, like I actually came up with, what did I call it? It was the 10 commandments of male grief is what I came up with? Just different things to say to women. Here's what we deal with, here's how we deal with it, here's how I feel like you can help, and so that's how the pages evolved.
Speaker 2:That's amazing. I have a friend of mine that they lost their child. He was, I want to say, like months old and obviously we as women we grieve very differently than men and her husband was internalizing it all and ended up, I think earlier this year, going to like and it was called a rehab but it wasn't for substance abuse, it was like for emotions and like, and thankfully is doing so much better. But that was one of the things that I mentioned to her. I was like, how has he even processed, like, the grief of losing a child? Like I know how you've processed it and how, and you're very open and vocal and you go to different counselors and all of that, but what is he doing? That's probably where the disconnect is, um, between you two, because there's such a difference in, like, the way you're processing, in the way that he's processing, that there's no communication in between. And yeah, she said that after that, he it was. It's been like night and day in terms of their relationship and it's I it's such a difficult emotion to deal with in general because it's like sometimes you want to laugh, sometimes you want to cry and sometimes you want to just remember the happy memories and sometimes, like we all grieve so differently.
Speaker 2:I have three kids that have lost my ex-boyfriend, which was their stepdad for six years. He passed away and that was difficult and each of them grieved so differently and there's no manual on how to deal with. Well, number one tell kids that a loved one has passed. And number two, how to help them process it. And I've experienced that with when he passed and when my dad passed. That was like their second father and it was the same. Like they all process differently and they all, like, still grieve it so differently. And so it's just, it's so different for everyone and it's not a linear.
Speaker 2:There's an illustration out there that, oh, these are the grief stages or whatever, and then it's like this, all these squiggly lines, that is perfectly what it illustrates, because there's no like set steps to grieving, you just allow the. It's like all the things, all of the things, and it could be different things. Sometimes you want to remember the good times and sometimes you're like, oh, it's so pissed because, like, why did you leave so quickly? Yeah, that is amazing. I will put all of the information on the show notes for Letters to Zachary so that we hopefully increase your following as well. I think it's very needed. What limiting beliefs or roadblocks did you have to overcome in order to get to where you are today? Blocks, did you?
Speaker 3:have to overcome in order to get to where you are today. Well, one thing I tried to stress to the female population, if you will there are a lot of societal things that we have to overcome just as a gender, and I really try to point out I'm not saying it's better or worse than the other side, but like I'm old enough of a generation where I was part of the tape it up and walk it off, rub some dirt on it generation. Are you hurt or are you injured? And yes, there's a difference. I'm old enough to be a part of that generation, and so I was always taught men are the foundation, we're strong, we're protectors, we're problem solvers, that kind of thing. That's the thing that we do.
Speaker 3:Sure, you can get emotional, but it's a limited time that you can be emotional and then you just got to suck it up and walk it off. That's just how it was. And so when you're programmed with that all your life and all of a sudden this moment comes in. I tell people all the time I said when you hit some of these stressful moments, you go back to what you know, when you don't have an answer, and that's what a lot of us men know, we know. Well, I got to compartmentalize this I'll have a moment later, if I ever get to it and so I try to tell women that y'all have to help create an environment where it's trusting and safe and I hate to use the word safe space, I know that's a key phrase these days.
Speaker 2:Yeah, where they feel comfortable. Yeah, where they feel comfortable, where you feel comfortable.
Speaker 3:And the two other short things I'll say is men have been taught from birth that the woman's emotion comes first period. It's just. That's just what we've been taught, and 99% of us don't mind that. I'm not saying there's a problem with that, but it has been instilled in us. Of the two people that are going to get emotional, it's going to be the woman. She has first dibs, first rights to it. Okay, fine, that's great and wonderful. But we're programmed to say, hey, you do this and I'll do everything else. While you're emotional, there's nothing in there, at least in the beginning, to say, hey, you can have time to deal with whatever you're dealing with. And so we have to overcome that hurdle. That we've been taught at least I was taught all my life.
Speaker 3:And then the last thing I would tell women is a lot of men, the reason why they don't open up because at some point they have told someone that they cared for it has been remembered at a later date and has been thrown back in their face specifically in an argument or something to hurt them. And I always use this example jokingly, as a stereotype, if you will. I said, as men you always hear, well, women will remember the most finite detail, like I remember, in January 23rd of 2021 at 4.30 PM, that you said this to me at this moment, and it may not so much be the case these days, I don't know. That's what I always grew up knowing, and so those are the three big things that men are just battling just to get to the point of opening up, and so that right, there is an uphill battle, not including the other things that men have to deal with yeah, absolutely so.
Speaker 2:What daily habits or rituals do you say helped you reach to where you are now?
Speaker 3:the journaling. Honestly, the irony of it all is, when my counselor suggested it, my response was I don't know if that's my thing, I don't know how great of a writer I am. Just because it helped me get it off my chest, because I'm one of those ones that would just sit on me. My mind would play it around a thousand times, and so at least in the beginning I could write a Word document or print it out, and I could either save it for a later date or if, if need be, I could just throw it in the fire and burn it just to get it out. That that was probably the biggest thing yeah, that's amazing and I agree.
Speaker 2:I just came to the conclusion with my therapist, like last time I saw her that because I I believe journaling, I think that it is amazing. And when you said, throw it up in the fire, that's where I need. Because when I was younger, my mom found my journal and read through it. I felt like that was an unsafe place for me and so I haven't gone back to journaling and I was so. That helped me so much before when I was in my teenage years, and I even tell my kids that now journal, even if you have to burn it, I'll help you burn it afterwards, like I'm not, I won't have to read it, just get it out. And as you said that I'm like, yeah, because it feels there's something that feels safe about I can get it all out and then get rid of it, so no one ever has to see that or whatever. So, yeah, I definitely second that. Anything else that you want to tell our listeners today.
Speaker 3:To men specifically our listeners today, to men specifically, it's ironic to me that a gender that does not like being told what to do at all falls into this category. When it comes to emotions, whether it's grief or anything else where they fall into, where everybody and their brother's telling them what to do on how to express themselves, and I go for a gender that doesn't like being told what to do on how to express themselves, and I go for a gender that doesn't like being told what to do, that wants to have control of things. You are certainly bending over backwards to let them control how you express yourself. Why are you concerned about what anybody else thinks, especially online? I would tell them do you know how many ignorant opinions there are online? Why are you concerned about them? They're behind a keyboard. How are they going to change your life in any form or fashion just because they type something? In yeah absolutely, absolutely.
Speaker 2:I love that. Well, thank you so much, jason. I so appreciate it, and my heart is seriously completely with you and your family, because it doesn't matter how many years have passed, but I don't think it ever becomes easier. We just learn how to live with it, and so I'm sending you guys all so much love. I hope you listeners got so much out of today and send this to somebody that you feel needs it. Whatever type of journey grief journey they're on, it is so important, it is so, so important, and I will put again all of Jason's information in the show notes. So please go follow, share it. I think that it's something that we as society need, but I really truly feel like men need this in their lives, because it is so tough to give that space for the men to be sensitive and be in their feelings. Sensitive and be in their feelings. But I definitely, I know it's needed, so please share. Thank you, listeners so much. I hope you have an amazing rest of your day. Peace out, love your life. Bye.
