Facing Grief and Life After Child Loss with Jason Tuttle

Grief can change the course of a life, and for Jason Tuttle, it became both a personal journey and a calling to help others. As a father and caregiver, he lived through the daily realities of hospital stays, medical decisions, and profound loss. After the death of his son in January 2022, Jason began to share his experiences with grief, end-of-life planning, and conscious living as a way to heal and to guide others through their own journeys.

Jason and his wife were in their twenties when their first son was born with Eagle-Barrett syndrome, a rare condition that required weeks in the NICU. Over time, both of their children developed severe developmental delays and epilepsy, and Jason became the full-time medical caregiver. He spent nearly every hospital day at their sides, balancing hope with the hard truths of illness. When his son died, grief came in waves of anger, isolation, and heartbreak. Therapy and journaling offered a way to process, and writing publicly helped him connect with others who felt the same.

Today Jason continues this work by creating resources, speaking about grief and dying, and sharing his perspective on legacy and healing. His journey shows how end-of-life care and death doula work are not only about preparing for death, but also about living with purpose and love. This conversation is an honest reflection on caregiving, conscious living, and the ways grief can shape a meaningful path forward.

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Transcript

Jason: [00:00:00] I was the one that decided to leave career and be a stay at home parent for 12 years, the 65 day 24 7 care for both of my kids. When he went into the hospital, I was admitted with him. I stayed with him. I was discharged with him. I did not leave his side any of the times I was in the hospital with him.

Jill: Welcome back to seeing death clearly. I'm your host, Jill McClennen, a death doula and end of life coach. Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects.

I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true. In this episode, I talk with Jason Tuttle, who shares his story of love loss and the search for meaning after the death of his son in 2022. Jason's journey with grief began long before as he and his wife navigated [00:01:00] life as parents, raising two children with complex medical needs when his son died, grief showed up in many ways, including anger, heartbreak, and isolation.

Through therapy, journaling, and eventually writing publicly. Jason began to heal and connect with others. Now he channels his experience into speaking, creating resources, and guiding conversations on grief, caregiving, and conscious living. Thank you for joining us for this conversation. Welcome, Jason to the podcast.

Thank you so much for taking time out of your Saturday morning for me. I appreciate it. Can you just start us off? Tell us a little bit about who you are, where you grew up, anything like that that you wanna share? 

Jason: I am a married father of two special needs children, born with a host of mental and physical disabilities.

I've been married this year will be 22 years to my wife. I am currently in Atlanta, Georgia, on the southwest suburbs. Growing [00:02:00] up, I've lived a little bit of everywhere. I was born north of Green Bay, Wisconsin. We moved to north of Seattle, Washington. Then I came to Mobile, Alabama where I grew up in grade school.

I've been in Georgia ever since, so I've almost made a full lap around the us. 

Jill: Yes, you have. That is definitely all over the United States. Mm-hmm. Congratulations. 22 years. That's a long time. My husband, and I'll be 20 years this year. I just feel like I don't really remember a time without him, even though like I know there was.

It's just like, well, no, we've been together forever and that's great. I think it's a good thing. Why don't you tell us a little bit about your story and what brought you on to a podcast where I talk about death, dying, and grief, but really how we live life with the reality of all those things. 

Jason: I love talking about such light topics of death and dying.

Essentially what started my story is my wife and I met when I was 25 or 26. My [00:03:00] wife was. Three years older than me. We got married about a year after we met, and just because of my wife's age, we decided we wanted to start having a family relatively soon after we got married just because. Everybody knows that when you get in your thirties, the complications may come up.

And so we got married when I was 26. She was 29. We had our first full year without kids, and then that second year we were just kinda like, well, we need to get started. My wife initially said to me, well, I want four kids. And my initial response was. Let's have one and then we'll talk. Yeah. And, but I mean, it wasn't that far off 'cause I kind of wanted the typical nuclear family, the three kids, the dog, that kind of stuff.

So having one more wasn't that much of a stretch. We started trying. It didn't take long. My wife got pregnant, and at least in the beginning of [00:04:00] that time, we had no reason to believe that our first child was gonna have any issues. Everything was perfectly normal. Nothing came up in any of the doctor's visits.

And then we get to the week 20 appointment, which that's kind of where you find out the sex of the child. So we go into this appointment and. I wanted to know the sex of the child because I was the planner. I was the one that put the nursery together and I wanted to know so I could cater it to boy or girl.

My wife did not. She was very much a proponent of. Well, this is life's last great surprise. I'd rather not know. So we get into this appointment and the ultrasound tech's doing her job and doing all the different photos that they take, we're playfully going back and forth of do we or don't we want to know, and before we can finish it, she goes, well, I've gotten to the point of.

Finding out the sex of the child. Do you want to know? We jokingly go back and forth and, and before we stop, she goes, I've found an [00:05:00] issue and I need to know. At that point, things got really, seriously very quickly. We then looked at the tech and said, we want to know what's the sex of our child. She said, you're having a boy.

Great, wonderful. I looked at her and said, can you tell me what the issue is? She said, well, that's more of a doctor relayed issue. I said, okay, then why did you need to know the sex of the child? She comes back and goes, if it's what I think it is, it's. Rare in boys, but even rarer in girls. So I needed to know the sex of the child.

From that week 20 appointment, we started seeing a perinatologist, which is a high risk OB GYN for the next. 18 weeks until my wife gave birth. In those 18 weeks, they told us of every terrible medically related scenario you can imagine your son's gonna be born with one kidney, which he actually was. That one kidney's gonna be damaged in utero, which it actually was.

Your [00:06:00] son's gonna have hydrocephalus, which is water on the brain. Fortunately, we did not have that. Your son's got areas of missing white matter in his brain, which did happen. They listed four or five other things as you can imagine, we're basically brand new married. This is our first child. We get to week 38.

My wife has a C-section. I'm in there with her at her head as they're doing the C-section. My son's born, they wrap 'em up and we'd see him about. 30 seconds, they show us our son and immediately take him to the NICU and the hospital. And it was that evening that we found out that my son was born with a rare condition that was one in 40,000 births at at the time in which he was born.

And. The doctor came over to me 'cause my wife had to recover. So the doctor comes over to me and goes, well, your son was born with a rare condition called Eagle Barrett Syndrome. And I went, what is that? And he gave me the highlights of it. I said, what does this mean? He said, [00:07:00] tomorrow what's gonna happen is the local children's hospital on the north side of Atlanta is gonna come down with their transport team.

They're gonna get your son and they're gonna take him up to the NICU up there because they're more well equipped. To deal with what may arise with your son's issues versus being down here. And I said, okay, but before the doctor left, I said. It's great that you wanna take him to the north side, but my wife has just carried this child for nine months and went through hours of labor and had a C-section.

I said, y'all are not leaving this hospital until my wife is aware enough to understand that she is looking at her son. Period. I said, I will not allow it until that happens. And he was just like, it's okay. The transport team's great. They'll take him up to his mother's room and give her a chance to see him, which he was kind of one of those transport almost incubators, if you will.

Mm-hmm. And she saw him for a, a few minutes and they took him up to the north side. [00:08:00] Now at that point, that was the next day, and nowadays when you have a C-section, you're in there the day you actually have it, you have another day where they want you up that next morning walking around, and then they give you a third day and then you're out the door.

On the second day, we were at the hospital that my wife had given birth in and I said. He's up on the north side. What would you like to do? I said, you've got another day here. It is your call. You're the one that went through it. I know it's probably painful, intense, whatever we're recovering from that. So it's your call of what you want to do.

My wife decided that she didn't wanna wait the day after she had a C-section. She was up and walking around and we were up to the north side. I'll give her all the credit in the world for doing that. But that's what started the first initial bout of grief in our family's life. And what I mean by that, and I didn't realize it at the time, was we were [00:09:00] grieving the life we thought we were gonna have versus the life that was handed to us.

You could say that after my son was born, the idea of a normal life kind of died that day. When we found out about all of the medical issues that we were now gonna have to deal with, 

Jill: and we don't talk about that too much in our culture, the term for that would be assumptive world grief. And even in the grief books, you don't see it talked about that much.

This grieving. Of what we thought life was going to be. So what happened from there? So your son was in the hospital and you spent time there. How long was he in the hospital? What did they tell you about his condition? 

Jason: So he went up to the children's hospital there. He was approximately there. 12 days after he was born a and at this point, my wife and I are my, well, my wife's on maternity leave and I was on paternity leave.

My degree is in education, so I was in education. Mm-hmm. And so I was able to [00:10:00] use FMLA, I think that's what it's called, just time off Seems in the hospital, in the nicu, he was assigned six different specialist doctors, nephrology, neurology, a pediatric neurosurgeon, urology. Something else. There were a lot of them, and I'll never forget it, about three days after he was there, we went up on a Sunday.

So it was like that Wednesday, my wife was at home recovering and I decided I wanted to come up and see him. My parents either came with me or met me up there. I walk in there and in, in this nicu, it's kind of a wide open. You've got your pods everywhere. I go over to the crib that he's in and I'm just sitting on the end, just kind of looking.

I'm admiring my son and all the wires and things that are going back and forth. I'm looking at him. Trying to figure out what's my next step? How are we gonna deal with this as a couple from the male point of view? How am I gonna provide for this? Whether it [00:11:00] be emotionally, physically, financially. 'cause being in a NICU day by day, whether the people want to admit it or not.

In the back of your brain you're going, that Ching keeps going up and up. So I'm sitting thinking about that and then the head nurse comes over to me. And I'll never forget it to this day, I don't remember what she said. All I remember was she was telling me what all five specialist doctors are doing and what the plan was, and it was just a whole host of information.

I don't remember what caught my attention, but she said something and it just hit me like a Mack truck. Hmm. And I doubled over. I was crying and I couldn't control it. I'll give the nurse credit. She was great. She was very comforting from what I remember. So we left from there, we went down to the cafeteria and I ate with my parents.

In the middle of that, just hit me again in the middle of the cafeteria, uh, of all places dealing with. Any family when you have a child, it's a [00:12:00] lot. It's a lot to undertake just for a child that is normal, if you will. And then you add on top of the fact that he's got a rare condition that nobody in a thousand miles has heard of, that I now have to research and figure out what it is.

Some of the issues that my son later developed, we didn't see in the beginning. What I didn't realize in the moment was. I've got this rare condition. What I didn't realize was six months to a year down the road, we were gonna find out he was neurologically delayed, which turned out to be severe delays in his life.

We found out that he was non-verbal. I found out by myself in the house playing with him one day that he was epileptic because he went into a grand mal seizure. 

Jill: Oh, 

Jason: and now the first one, I will admit, it freaked me out 'cause I'd never seen one before. Now down the road when it would happen, I didn't even bat an eyelash 'cause I'd seen so many of 'em and I knew what to do and I knew how to just handle it.[00:13:00] 

There were several things that later on down the road we didn't know in the beginning that we found out six months to a year later. 

Jill: Mm-hmm. And that is so difficult to navigate. Did they give you any type of support, like the hospital, the doctor? You know, that's one of the criticism. I guess I'd say that sometimes if people have a child, an infant.

That has severe medical conditions. There's no like training, there's no help. It's kind of like, here you go. Here's your baby. Now you need to go and navigate all these things and figure it out. 

Jason: Yes and no. I don't fault the children's hospital. There was a lot of information thrown at me, and even with the rare condition in the beginning.

When I would deal with doctors and they didn't necessarily know what the rare condition was, I later realized, do you know how many rare conditions there are out there? And no one doctor can know them all. 

Jill: Yeah. 

Jason: And so that's what I realized [00:14:00] down the road. They had their care team and their people that dealt with social work that would come up and say.

Hey, here's some things you might wanna look into if your son is going down this path or this path, you know, based on what happens. Because at the time he was 12 days old, we didn't really know what direction he was gonna go into, but whether they did or did not, I'm a researcher. When I get into something, I'm either all or nothing.

And so when I get into, I'm like 150% when I get into something. So when he got home, I immediately looked up Eagle Barrett syndrome. I knew it by its more commonly known name. I found the National Organization of Rare Diseases through the government. At the time, and this is gonna date me, I was on MySpace of all things.

Jill: Yeah. 

Jason: And I actually typed it in and found someone on the west coast that had a child with it three days after we got home. 

Jill: Oh wow. 

Jason: I was connecting with people and trying to figure out what [00:15:00] was going on, giving me an idea of what I was in store for. So the hospital was good in the sense of they were gi, they gave me outlets.

But it was more me, because I'm one of those people, I'm just like, well, this is what I know. Let's see what I can find on it. And that's kind of what I did. 

Jill: Did you have a lot of community support? Is your family religious? Did you have a religious community or any community around you locally, like support you through it?

Jason: My parents are 30 minutes one way. My wife's parents are 30 minutes the other way. We are literally in the center. My parents were more supportive in this sense. They kind of jumped into it like I did. What can we do to help? What are the signs? In the early days, they would give us a break every Sunday and watch.

My son said we could have a day. To catch our breath. They would want to know what are the characteristics of it? What do we need to look out for just in case something were to happen. Now, my wife's parents' side, they were supportive in the sense of they were very loving. We would [00:16:00] go over there with our son, but.

They didn't really know. I don't think they really understood or knew really how to handle it. I don't fault them. It was just something so new they didn't really know what to do. I, I don't wanna call 'em standoffish, but they kinda stood back. They loved on 'em like any grandparent would and, and played with them.

But it was more my parents that were hands-on. Should something medical come up. 

Jill: And you said you had two children, correct? 

Jason: I do. My daughter. Was born two years, almost to the day of my son. 

Jill: Okay. 

Jason: She initially was called the normal one for a little while. In the beginning we didn't think she had any issues, but about six months down the road, my son had an occupational therapist that came to the house and she had an intern that came with her and one day she goes, do you care if my intern.

Test your daughter with. It's something called the Peabody [00:17:00] Skills Assessment Test. It tells 'em where they fall on the spectrum of how they're learning to talk and walk, and all those milestones you would normally expect out of a child on a normal progression. The intern came back to me that day and said, it's in my professional opinion that your daughter is delayed after hearing everything with my son.

My brain could not handle it. She told me that in my house, and I literally looked at her for lack of better ways to say it. I went, pack up your shit and get outta my house. I couldn't process it. I had so much going on with my son that I was just like, I can't handle more medical issues at this point. I later went back and apologized to her.

I said, look, it's not you. I've just got a lot going on. The actual therapist said You might want to have your neurologist look at your daughter. Because I already had one for my son. Yeah. It was the neurologist that did CT scans and MRIs and all that stuff, and he came back [00:18:00] and said, yeah, I would agree with her.

It's six months down the road for her. We found out about her delays. Both of my kids were nonverbal. Both of them were epileptic. Both of them had severe delays. My daughter was 16 years old and functions about seven or eight years old. They could walk with assistance, but to walk on their own, no, they're essentially wheelchair bound.

Now. They can army crawl on the ground, but they can't stand up. Right and walk. Within the first five years, I had two kids that had identical issues, except for my son had a rare condition on top of everything else. 

Jill: And so is the conditions that they both have related, like is it a hereditary thing? 

Jason: No, like a lot of rare condition.

It just popped up. The developmental delays, the epilepsy, the non-verbal, all those other things were all separate and none of them were related to anything else. Wow. And, and even during that [00:19:00] time, my father got really big into ancestry.com and genealogy. My father had researched back like 10 generations and there was no record of any medical issues that wasn't self-induced, like alcoholism or something to that effect.

My wife and I, when we found out about our daughter, we came back and we said, what's the odds? That there are no medically fragile people and, uh, both of our families for as far back as we can see. And you and I have two within two years of each other. 

Jill: Oh my gosh. There's just so much grief tied up with all of that.

And you said your daughter's 16 now? Yes. And then how about your son? What happened with him? 

Jason: Okay, so of the two kids, my son was the more medically fragile. And what I mean by that is. I knew the main characteristics of his rare condition, but what I didn't know was a lot of rare conditions. You have to start to kind of be concerned about the secondary issues that come in related to the [00:20:00] rare condition.

And with my son's condition, he got really susceptible to respiratory related illnesses. Like the first five years of his life, we were in one of the ICUs at the local children's hospital every six months for five years. I knew anywhere from October to February. At some point, he was gonna catch a cold.

And I wouldn't be able to catch up to it. And so at that point, I would have to take him to the hospital and he'd be admitted. Later on, I had all the home respiratory related equipment, like I had six machines. This is his room. And so I had six machines in this room that I knew how to run in case something were to happen.

And if I couldn't catch up to it, I knew at that point I was gonna have to take him to the hospital and he'd get admitted. He was the more medically fragile. January, 2022, about three days before he passed, both of my kids came home. They were both in self-contained special ed classrooms. They were [00:21:00] both in wheelchairs.

So what would happen is they would come home to my house, lift bus would drop 'em off. I'd bring 'em both in. I'd have to live both of them out of their chairs and get 'em both changed and diaper changed and dressed in their lounge wear. And you know, I'd do snacks in the evening and their drinks and I'd goof off for a little while and I'd make dinner and just kind of go through the routine.

Three days before I made one of my son's favorite meals and he ate like a horse. Didn't think much about it. Usually what would happen was I'd put my daughter to bed at about seven 30. She would go to bed and I'd keep my son up for about an hour later just to give him some one-on-one time. I love my daughter, but my daughter can be intense at times, needing the attention.

Even though he was non-verbal, there would be times he would just give me these looks like I need a break from her. Mm-hmm. And that's kind of how that evolved. Giving him some time with his mother and myself without his sister around. That evening, put his sister [00:22:00] to bed. What we would do is we would go in our master bedroom and lay him either side of the bed and we'd lay him in the middle.

He'd get army crawl and roll like nobody's business, and we'd goof off with him watching TV for about an hour that evening. We went to brush his teeth and we used an electric toothbrush 'cause he liked it 'cause of his sensory issues. My wife went to brush his teeth and he threw up a little bit and I looked at her and I said, maybe you went back a little bit too far with the toothbrush head, and it hit his gag reflex and something was still there.

It came up. Yeah. We cleaned him up. We put him to bed. My son was always a great sleeper from the day we brought him home. He was always a great sleeper. We put him to bed and that night he was up and down all night long and it was, was very unusual for him. Mm-hmm. So the next morning I get up. At this point I'm a stay-at-home parent.

I'm the medical caregiver. I do, the hospital stays and everything related to, to both of my kids. That morning I text his teacher and say, Hey, Zachary's got something. [00:23:00] I don't know what it is. I'm not sure if it's contagious. I'm gonna keep 'em home. Great. Wonderful. That was a Wednesday. That was Thursday at school and she said, okay, I'll see you Friday.

I get my daughter up and going. I get her on the bus and I get my son up that morning and I put him in his favorite spot and he absolutely refuses to close his eyes. And I keep looking at him and I go, buddy, you're not gonna miss anything. I'm on my laptop. If you're hoping I'm gonna do something exciting, I'm not.

I'm just doing work. But he absolutely refused to go take a nap. 'cause I knew he was tired. 'cause at that point he had been up for 20 something hours up and down all night, right? He, he didn't really want to eat a whole lot, didn't really want to drink a whole lot, and that didn't really catch my attention.

However, if it had gone into the next day, I would've gone, something's not right. Maybe I need to take him to the hospital. So he's up all, all day, and then that evening I put him to bed the same time as his sister. He immediately gets quiet. At that point, he was in middle school. [00:24:00] We still had monitors in both of their rooms so we could hear him.

There were a couple of times overnight, like I literally bolted outta bed. I got him up and rushed him to the hospital in the middle of the night, just based on a sound I heard. 

Jill: Yeah, 

Jason: so he got quiet that evening. We just thought he was exhausted. We thought his body finally gave out and he just fell asleep that evening.

I told my wife, I'm gonna text the teacher. I said, it's gonna be Friday. I'm gonna keep him out. At least if I keep him out Friday, I've got the whole weekend for him to recover. We should be able to go back on Monday. Teacher was good with it, got my daughter up, got her off, and that morning, which is the Friday.

I went into my son's room, which is the room behind me. Typically, when I would go into his room, he would bounce and get excited and clap his hands. I came in that morning and he was awake. He was looking at me and it was unusual. I walked over to the far side of the bed and I put the railing down. I noticed a dark green streak of fluid coming out of the corner of his mouth.

I immediately looked at that and looked at my wife and said, the only [00:25:00] thing that's dark green that I know that would come outta your body is bile, and why is it coming out of his mouth? Yeah, so I get him up and he's floppy and lethargic. That didn't really surprise me. 'cause I'd had a couple of respiratory stays where he was like that.

All that really told me was something's not right and I need to give him immediate attention. I take him outta the living room. I go through my medical protocol, something's still not right. And I paused for a second to think. I looked at my wife, I said, I'm getting 'em dressed. I'm taking 'em to Children's Hospital.

I said, something is really not right, and I don't know what it is. So I get him in his chair. I get him in the van, and I do like a hundred miles an hour up to the children's hospital. I get up there, I park in the parking deck. I get his chair and I go to lift him out of the van. He's really floppy at this point, and this catches my attention.

So I get him in his chair. I get up to the er. And I get in the doors and I skip the cue line because something's really not right, like I [00:26:00] need immediate attention before I can get to the desk. The security guard comes over to me as if to say, you need to get in line. And before he can say anything, I go, he's not breathing.

I need help. Immediately, he snaps his finger at the nurse. She comes over to me. And I've been in this hospital a hundred times before. She says, follow me. And as fast as we can run, we run back into the ER to a trauma room. We get in the trauma room. And because I've been in the hospital so much, I instinctively, I unbuckle 'em.

I put him on the, the, the gurney or the table that's there in the trauma room, and I back away and hope that they'll let me stay in there because one, the state in which my son's in, he's not gonna be able to tell him what's going on. And even if he were, he was nonverbal, he still couldn't tell 'em what was going on.

There was another trauma room where the doors were open on the side and I backed in there and they let me stay in there. They all come in there, like 30 people come in, they immediately cut off all of his clothes. They intubate him putting the tube down in him [00:27:00] to get air into his lungs. And the first thing that really surprises me is they go down to his knee and they literally take this medical drill and drill a port directly into his knee.

No anesthesia, nothing. Wow. And so I look at it and I look at the monitor 'cause I'm so used to looking at it at him, and he doesn't even flinch. Now, I later asked, I said, what did you do right there? And he said, typically when people come in and the state your son was in, when we don't know what's going on, we'll do that so we can immediately get something in his system.

Okay. And so that's kind of a fast track port. When I was looking at my son, my thought was there's no anesthesia. If that were someone in their sane mind, they would come outta their skin. Mm-hmm. Because that would've been mind-numbingly painful. I'm backed off in the trauma room and then the head D doc comes over to me and she goes, how long has he been this way?

Down to the minute, and I say, this is what he was doing. He's plus or minus two minutes. She goes off and barks orders. And before she can get [00:28:00] back to me, they start doing chest compressions on my son. The head er doc comes back over to me and she goes, explain to me the scenario as to why you brought him up here.

What were the symptoms? What made you think you needed to bring him up here? And so I tell her the whole scenario. She goes back over and barks orders at him and they start doing whatever their processes are. They're still doing chest compressions on him. There's like two guys that are switching back and forth doing it, and after about five or six minutes, I see him get the paddles out and I hear it all clear, just like a medical drum, he raises off the table.

In this moment, I'm watching the monitor and it literally beeps once and it goes right back to what it's doing. As I'm watching him, I go, he's not coming back. Now, understand, this is six minutes in. They work on him a total of 45 minutes. I go, he's not coming back in the moment. I have to compartmentalize 'cause I'm trying to absorb everything that's going on, not realizing the [00:29:00] severity, what they tell me 30 minutes later.

So they, they shock him once they continued doing things, and over time they probably shock him four or five times and it's all the same result. Finally, the head er doc comes over to me and she goes, I could shock him again, she said, but unfortunately, I think the result's can be the same thing. And I look at her and go, well, I know a lot about my son's condition.

I said, this is outta my medical wheelhouse. Do what you think is necessary. And I think they shock him. Again. I don't remember. If they did, she comes over to me and she goes, I'm sorry, but your son has passed and they pronounce him. As you can imagine, I turn into the open room and I have a moment of grief for about 30 seconds.

It was that fast and I compartmentalized it. At that point, I called his mother. His mother was at home working. As far as she knew, I was taking him to the hospital. He was gonna get admitted. We were gonna be there for our seven to 10 days like we [00:30:00] always were. And I was just telling her he was being admitted.

Well, I had to call her and tell her that her son was dead on a table, and I will never forget the sound she made when I told her that it's burned into my memory. So she regains her composure. Look, I'm not here to tell you what to do, but this is what you need to do. I know you're upset. I know you're distraught.

Contact your boss. Tell 'em what's going on. Call your parents. Have them come over to drive you up here. Do not drive. Come up. I said, I'm in this room at the hospital. This is the number of it. Tell 'em you're here with me. They'll bring you back. And so that's what she did. I then had to call my mother who'd watched my son many times over the years, and I'll never forget the sound she made.

A couple of days later, my mother pulls me to the side and she goes, I got a question for you. And I said, what's that? And she goes. How soon after Zachary passed did you call me? I said, 10 minutes maybe. And she goes, it was only 10 minutes [00:31:00] after you had lost Zach, and you called me and I said, yeah. And she said, you were stoically and eerily calm when you called me.

And she said you had literally just lost your son and you had no emotion. Unfortunately, in that moment, I had to compartmentalize because if I were a blubbering idiot, I wouldn't have been able to get the information to. His mother, you and the people I needed to talk to. And even when the care team came in there, my son was laying on the table after he'd been pronounced.

And I looked there and said, this is gonna sound cold and callous and I don't mean it to be. And I pointed to my son, I said, I will deal with him in a minute. What's gonna help me now as I've got questions that I need answers to? She said, okay, what do you need answers to? And I rapid fired like 20 questions at her, one right after another.

I said, I need answers to those that will bring me comfort in this moment. I said, I'll have a motion for this later, and that's kind of how the day went. People always ask me on that day, outside of losing what were the [00:32:00] hardest things that day, and I said. Two things that I will never forget. I said, after she had left to get information for me, I went to sit by him and stroke his hand and tell him I love him.

I went to grab his hand and I was shocked at how cold he was. I mean, it had only been 45 minutes and he was ice cold. The other thing that I tell people that I will never forget is, you know, my wife had come up there and her parents had come up there. We'd spent our time with them and you know, we, we knew what we knew needed to do for funeral, that kind of stuff.

I had to take all this cutoff clothes, put it on his empty wheelchair and wheel it through that hospital, and that was the hardest walk I think I've ever had to walk. And those are outside of losing them. Those are the two things that I will never forget. 

Jill: Yeah, I am so sorry. As a mother, these are like the conversations that are the hardest for me.

Mm-hmm. To talk to people who have had children that have died. But I also know that pretending this is not reality is not gonna keep me safe and is not gonna keep my children [00:33:00] safe. So I'm definitely over here crying a little bit. Especially when you said about the noise that came out of your wife and your mother.

I've heard that from many people that when they found out a tragic loss, they were like, it, it wasn't human, like the noise that I made. It was something else. I'm so sorry that you had to experience that. What actually was the cause of his death though? Like did he aspirate when he had vomited or was it something else?

Jason: The official on the death certificate was sepsis and cardiac arrest due to sepsis. However, I tend to notice things that maybe other people don't. One reason I was so hyper-focused in the trauma room was I was listening for words and phrasings they were using as they were treating him. I knew that once everything was said and done, I could request a, a copy of the notes of everything that happened in the ER that day, which I did.

One of the things I didn't tell you that morning when I went to do my [00:34:00] medical protocol, because of his rare condition, his stomach was very spongy, pliable, more so than a normal person. Well, that morning when I went to go feel his stomach, it was rock hard, like cinder block wall rock hard. Like it caught my attention.

After everything was said and done, I went online to like. WebMD and Mayo Clinic and these where you can research and look up different medical conditions. And the closest thing I can think of is, well, when you go to these different sites, when you find conditions, some of them will go, well, if you see these symptoms, make an appointment with your doctor, go to urgent care, that kind of thing.

And then some of them will say, if you see these symptoms go to an er. Based on everything I heard and saw in the notes, I looked it up. It's not official, but I have told my wife several times, I would be willing to bet my paycheck that it was gastroenteritis. Every website I went to said, if you see these signs, which he had all of them take them to a [00:35:00] hospital immediately, it was issues that.

I was not familiar with, so I didn't think anything of it. If it had been respiratory related that I had dealt with a hundred times, I would've taken 'em up, but these were just symptoms I'd never seen before. I thought maybe he had a 24 hour virus, which he'd got several times in his life. I figured he just needed to recover and get through it.

But yeah, I personally believe it was gastroenteritis and he got an infection somewhere, and then it got into the bloodstream. Even in the hospital, the ER doc said. When people or children get sepsis, if we don't catch it fast enough, if it gets in the bloodstream, it goes from a fatality rate of 50 or 60% to like 95.

Oh wow. Like it vastly jumps and she goes. The best I can tell you is he probably had an infection somewhere. It got to the point of sepsis, it got into his system and it just went too far because in the moment I [00:36:00] said, do you know where it could have come from? And she was honest with me. She goes, unfortunately, no.

She said, right now I could tell you a hundred different places it could potentially come from. Mm-hmm. And so to pinpoint it. There's no way of telling you at the moment, so you know, I'm accepting of the fact it was sepsis and what I believe it to be. I mean, it's an unfortunate event, but I tell people from the moment I got him up that morning to the moment he was pronounced was two hours.

It was that fast. 

Jill: That is so fast. You said his name is Zachary? 

Jason: It is. 

Jill: How old was Zachary when he died? 

Jason: He had been 15 for. Two months. So he had just turned 15. 

Jill: And that was three years ago. 2022. 

Jason: Yes. It was January 28th, 2022. 

Jill: One of the last three years been like for you as a family, how have you been working with your grief as a family together or even separately?

It's been 

Jason: [00:37:00] together and it's been both. Honestly. I as a man, as you can imagine, my first emotion was anger. It wasn't necessarily directed at anybody. It was more of an internal thing. And I say that because I was the one that decided to leave career and be a stay at home parent for 12 years. I was the 1 365 day 24 7 care for both of my kids.

When he went into the hospital, I went with him. I was admitted with him. I stayed with him. I was discharged with him. I did not leave his side. Any of the times I was in the hospital with him of the hundred days he was in the hospital, I was with him, 97 of them. I mean I was there and the only reason that last one was 'cause I had one stay that was like 12 days and I was finally going stir crazy.

I called his mother and said, can you come up here for a day or two? I need a break. And so that was the only time I ever missed, but so I intentionally grieved for probably a year and a half. I, [00:38:00] I'm a big proponent of therapy. The irony of therapy was I'd literally felt like I'd just gone through a season and two weeks before canceled my sessions with my therapist.

I called him and said, you know, I think we've ran through this season. I don't know if I have a whole lot to talk about for an hour. And I said, I'm gonna stop coming to see you. Should I need y'all? Get on your waiting list again? When this happened, the week after I called her and said, Hey, I need an emergency session.

Can you please fit me in? From that point, I went every week for another year to see her. So I sorted through it. With that. I did all the typical signs, I had the anger and the, you know, having a hard time accepting it. The bargaining, the five stages, agree of I did all of them. I. Wanted to be reclusive a lot because as a side thing, in a normal situation, I don't mind being out in public, but I'm not really a public person anyway.

I don't like big crowds, that kind of thing. So this only kind of amplified that. But there are a [00:39:00] lot of times I just didn't want to go anywhere. I didn't want deal with people and I didn't want to deal with everybody that would see me, that would give that kind of. Pity response, if you will. Hey, how's it going?

They tilt their head when they talk to you. I'd had that so much for like the first six months. I'd just like, I don't wanna explain it anymore. Those people that know, know. Great. I'm very open about it, which is why I'm doing what I'm doing online. My wife is kind of quiet and reserved and she'll go off and have her moments and have her time about it and she'll come back and she'll be okay.

My daughter has developmental delays and is non-verbals. I think she understood it. For a while I thought she was angry at me, which I didn't take it personally just because she always knew I took my son there. I stayed there and I came home with him. The day he passed, she was at school. So when she got home, she kind of looked at me like, where's her Bubba?

And he wasn't [00:40:00] there. And so I had to find a really simplistic way to explain it to her. And even then, I don't know if she really. Grasped it in the moment. Now down the road, I think she understands it maybe a little better, maybe not a hundred percent, but she understands he is not here and that he's not coming back.

Those kind of simple ways of looking at it. So we've all kind of done our separate and our together kind of grieving. 

Jill: And so what brought you to sharing your story and podcasting? And you said the things that you're doing online, like what's your. Reason for going out into the world and sharing this story with everybody?

Jason: Well, the running joke I have with people is because of spite, let me define that. We all know that Facebook has a group for everything. 

Jill: Mm-hmm. 

Jason: And so when my son had passed, I went to find grief groups on Facebook to join to deal with people that are in different spots in the grief journey. You know, whether they're new, down the road, [00:41:00] old veterans at a, and every group I would go into would have.

99% women. Maybe 1% man. And of those men, none of them were active in there. Mm-hmm. Now, granted I'm an anomaly because I'm active everywhere I go online when it comes to things like this, it doesn't bother me what people think about it. You know, this is what I'm dealing with. If you don't like it, that's fine, but it's not gonna stop me from sharing it.

And so I say it's outta spite because I got so irritated that I couldn't find, I knew I wasn't gonna find men exactly in my situation, but I at least wanted them in the ballpark and I couldn't find any men to bounce ideas off of. So I decided that I was gonna start journaling, and this was actually a suggestion of my therapist and I journaled several times a day for.

Weeks in the beginning, I don't know why I saved them. I saved word documents as letters. There was no real rhyme or reason as to why I saved them. [00:42:00] One of the groups I got into is a smaller grief group and I got to know the female admin very well. One day I said, Hey, do you mind if I share one of my journal entries?

She goes, yes, we would love you to 'cause we either never or very rarely get men willing to open up in this group. And I said, okay. I got one of my letters and copied and pasted it right before I hit send to post it in the group. I paused for a minute. This was about nine months into grief. I said to myself.

As noble as this might be, am I ready for the possible negative comments I may get? And am I in the head space to deal with them? Yeah, because I knew at that point, if I got negative comments, I was probably gonna jump down their throat. I finally just said, I, I'm gonna do it anyways. We'll see what happens.

So I posted it that morning. I waited and waited, and finally that evening I got a massively positive response. Every comment in there was. Very positive about what I'd written. [00:43:00] One woman came back, she goes, you know, we've never met, we've never crossed paths. I have never told anybody how I feel. Deep down inside.

And she said, I just read your letter. You hid how I feel Nail on the head. Exactly. She said, you could not have stated it better how I feel about this experience. And I said, well, I appreciate it. It's inspired by my son. I'm glad I could write something that resonates with you. If I hadn't gotten that response from that first letter, I probably wouldn't be anywhere where I am now.

It was because of that first positive response that I thought, Hmm, I might have something here. So I kept sharing 'em and it grew from there. It went from sharing in groups to, I made a Facebook page and I started getting a following, and then I thought, if I'm getting a following on Facebook. Let's see what Instagram does.

I started getting a following on Instagram, doing the visual experience. Then I was like, if I'm doing well on Instagram, I'll do TikTok, that [00:44:00] I can do short form videos and with my A DHD and my, the random thoughts I have all the time, especially as it relates to grief, the. Tiktoks, wonderful for my brain.

Plus I can get immediate feedback and I do video responses back to the people that are responding to me, which I really like to do. It grew into a professional website that combines everything grief related. It's just grown up from there. At this point, I'm published with a grief coloring book that people can use for both adults and children.

I decided I wanted to share because. When I got that initial first response and subsequent responses, I got the feeling that people are clamoring for raw real truth with no filter on it. That's why they were coming to what I was writing. TV shows do a decent job about showing what grief is like, but in my opinion, they do a decent job, but they don't do an [00:45:00] adequate job.

Yeah. And what I'm here for is to go, you know, when people ask me. I'm very blunt about it. I'll go, yeah, grief sucks. It's terrible. You're gonna have those moments where you're beaten on the wall or you wanna punch a hole through the drywall. You're gonna have those angry moments. You're gonna have those sad moments.

And so that's what I felt like is the reason why I have the following. I do, and I've subsequently had other people I've collaborated with said one thing's for sure with you. If you've got a thought on your mind as it relates to grief, you are going to share it and. That's what I think the draw to me is outside of the fact that, you know, I'm kind of the proverbial unicorn, if you will, because I'm a man willing to open up.

Mm-hmm. Kind of how all this has evolved. 

Jill: I will for sure put links in the show notes to all of those things. Your website, your Instagram, your TikTok, your Facebook, whatever it is that you have, I will link it so that people can find you. I definitely really wanna read some of [00:46:00] those letters 'cause I think that's a great way to get some of those feelings out, is to write it down, whether it's by hand or typing it or whatever it is that you do.

Jason: If you go onto my website, it's the third section down. I have every journal entry for the first full year on there and it so. If you read them, even my wife has come back, she said, if, if you read your writing from the first one you did through the end of your first year, you can see your evolution through it.

Jill: That's beautiful. I really appreciate you taking the time today, Jason. This was, thank you, wonderful hearing about your family and your story. As sad as it is, I love being able to connect with people that aren't afraid to have these conversations. If you enjoyed this episode, please share it with a friend or family member who.

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Thank you and I look forward to seeing you in next week's episode of Seeing Death. Clearly.