A Man's Perspective on Grieving

We are joined today with Jason Tuttle, who is a former stay at home parent and married father of two kids with multiple physical and cognitive disabilities. He lost his 15 year old son, sadly, uh, on January of 2022. From that day, Jason decided that he wanted to help others while he grieved.

So he created an online group called Letters to Zachary, as an open, raw, vulnerable way to be an example and share his feelings, as well as help others to see a glimpse into the male mind and how it grieves. Jason, thank you so much for joining us today and sharing your story with us. I appreciate it.

Thank you so much for having me. Uh, I'm thrilled to be here.

Yeah, and I know that, um, this is a very tender space for you, so we appreciate your vulnerability and you seeing how important it is to share that with, with other people out there.

Certainly, uh, in the grand scheme of things, the short amount of time I've done this and the response I've gotten, there seems to be a huge need.

There really is. I think grief is one of those places. Um, I think culturally for women, it's probably a little more acceptable to, to show the emotions and to process grief. But for men, I still don't think we're there yet. And it's amazing that you're coming out bravely to talk about this.

Well, my wife would tell you that I, that I'm, I've never been the norm as it is. Um, I've always kind of bucked the trends, if you will. Um, I personally believe as it relates to grief and a lot of other issues that people need to see the good, the bad and the ugly. I mean, we see what, what we see on TV and the news and just what society portrays of it, but that's, that's just a short glimpse into what actually grief is.

And for those that have never experienced loss, Yeah, we, we get the, um, the typical responses that people know that are kind of the right things to say, cause they just don't know how to come up and talk to someone who's lost someone. And yes, it's that, but it's, it's honestly so much more than that.

Yeah, I would imagine. And it's, I think it's hard for both people, right? It's hard for the person that's grieving and it's hard for the person that's trying to comfort those who are grieving because nobody really has experience in that, right?

one of the reasons why a lot of people have a hard time dealing with grief is because A lot of people get the sugar coated version of it

Yeah.

And like, and I didn't say it when we were initially recording, but you know, like when I first posted that first post, like I put a disclaimer to it. I said, I said, look, I said, this is going to be raw in the moment how I'm feeling. If I felt like that I needed to write an F bomb into what I'm, because that's how I was feeling in

the moment, that's what I wrote. If I felt like I wanted to write about some of the dark thoughts I was having as it relates to losing my son and not being able to save him and all that kind of thing, that's what I wrote about

And 

You know, if grief sucks, I want them to tell me, yeah, grief sucks. It's gonna knock you down. It's gonna be hard. You're gonna have days where you don't want to get out of bed. You don't want to talk to people.

You don't want to deal with anybody. You know, you want to be in a ball in the corner. Yeah, all those days are gonna come, but all of those days are natural.

All of those days are, they're completely under the umbrella of what grief is, especially that first six months to a year. 

when people ask me what grief is like, I look at him and say the best analogy I can give you is imagine you're riding a train, you're going through the Rocky Mountains and all of a sudden you come upon a tunnel. And you're in the center of the tunnel. It's pitch black.

You can't see anything in the moment that you lose your child. You're in that pitch black. You don't know where to go. You're lost. You're trying to find your way around. You're bumping into everything on the inside of that train. It knocks you over at times that kind of thing. You continually do that. But eventually after enough time with you slowly moving forward, you'll start to see the light at the end of the tunnel and you'll start to, a little more clarity will come and a little more clarity come until you can get to a point where you can move forward.

Now you get through that tunnel, but unfortunately in grief, you get through that tunnel and you can see all, you can see several miles down the track on your grief journey, but you also see. several more tunnels on that very same track. So where you may get into light for a short period and have a lesser moment, you know more, more trials are gonna, they're coming.

Now in the beginning of that grief journey, um, the tunnels are close together, but the farther along you get on that grief journey, the farther spaced out those blacked out tunnels are. So for in the, in the beginning for me, Those tunnel, when I left one tunnel, I immediately went into another tunnel, but now at two and a half years out, I've gotten out of a tunnel and the next tunnel may be a mile down the track. 

Yeah

When someone that has not dealt with grief, and I dealt with this, and many people in the community haveit forces them to look at something that they don't want to talk about. It forces them to look at mortality, which I know is a difficult topic, and 99 percent of us, until we're forced to deal with it, why would we want to deal with it?

 none of us get out of this life alive. At some point, you're going to have to deal with it. And in my son's case, and even my daughter's, I was always under the mindset, I'm going to prepare for the worst, expect the best, and then I'm not, then I'm not surprised. So. My son had chronic illnesses. Did I think he was going to pass early? No, I didn't. Did I always know it was a possibility because of his issues? 100 percent I knew it was there. So,

I don't know that many of us can relate to that, actually. I, I, I don't even know how to respond to that, really, because it's, um, it's probably the healthy way to look at things, is that you have to prepare yourself, but it's certainly not the way that you want to, right? 

no, probably the biggest thing that kind of threw me for a loop, if you will, is, The way he passed was sudden and unexpected. That was probably the biggest punch. Yeah. He had a lot of chronic illnesses and all that. And even the official cause to why he passed away was the symptoms that I saw that morning while he was still alive was nothing I had dealt with before. Nothing I'd never seen before. Didn't know what they were. I just knew that they were different and it was honestly just a hunch. As to why I brought him to the hospital,

Well, I mean, we were just as any parent, we were, we were just stunned as what had happened.

I mean, he had, I, and so he woke up at two 8 30 that morning by 10. I think it's 10 34. He was pronounced So two hours that morning,

it took him from start to finish that all that happened. And then, you know, you get into all the, all the funeral process and you know, it's what they say, you have the worst day of your life and you have to make a thousand decisions, you know, so,

I, I just, words can't express, I, I can't imagine, I just can't imagine. 

how did you get through all of that?

I've always been naturally ornery or stubborn. I come from a long line of people, uh, that are ornery and stubborn. Um, 

like with my son, I just had a regiment that I had to go through on a normal day, let alone those moments where, where things happened and I would have to make split the second decisions and essentially throw them in the van and 

drive up the hospital.

I'd, Throw them in the van and I'd get on the interstate and I'd be doing 90 to 100 down to the end, down to the children's hospital, get them to the hospital. And so I just, I guess there's this drive that I've got, if you will, that just pushes me to, it's an, it's in every area of my life. My, my wife will tell you that when I, if I get my brain going on something, I will not stop until it's done. Even if it means when I stop, I drop,

I will do it.

I wonder if you were able to process some of your emotions through responsibilities. You know how some people do things to, they, they get busy and that's how they, they, they manage their stress and their, uh, they just, they're busy and other people, you know, stop. Mm hmm.

do, and that's a common sentiment in the grief world that, that, that's for a lot of men is detrimental because one of the reasons why men don't really open up is they figure if they get busy enough, they don't have to process it. But unfortunately with grief, the common sentiment is the only way to get through grief is to grieve.

Mm

I mean, there, there's just, there's no alternate route. You have to go through it. You have to experience whatever the tough moments are for you

Well, that's true. That's true. And you know, for our listeners, there is, there's the grief of losing someone. And then there's the grief of losing the person that you thought you had. And I'm sure you experienced that too, when your children were born with multiple disabilities, you have this picture in your mind of what it's going, what your life is going to be like.

And then it changes and you learn to love that child. you know, unconditionally, but there's a grief process there as well. So I think that grief can, can face us many times during our life.

Certainly. Um, there was certainly a huge, uh, learning curve when it came to, you know, what, And what any parent thinks their life is going to be like, you know, you, you marry your significant other, you decide that you want to have a family and you know, you know, my wife got pregnant. And honestly, for the start of our story was we had no reason to believe there were any issues for generations in my family.

And so when we got to the week 20 appointment, which is the appointment that you find out the sex of the child 

the ultrasound tech literally looked at us and said, I need to know the sex of your child because I've found an issue, Uh, at that point we were just like, we want to know the sex, what's the issue? And so she said, well, you're having a boy as for what the issues, that's kind of a doctor re relayed message.

And so I looked at her and said, well, if you can't say that, why do you need to know the sex of the child? And so she comes back and goes, well, if it's what I think it is, it's rare in boys, but even rarer in girls. And so I needed to know the sex of the child to kind of let the doctor know. Here's what's going on.

Here's the sex of the child. Here you go. And so from that point, from week 20 on through my son's entire life and continuing on with my daughter's life, uh, it's just been one kind of hurdle after the other.

Wow. That's a lot as a parent. So does your daughter have the exact, um, genetic, what, what, tell us a little bit about what your son Zachary had so that we understand that.

Okay, well, the easy things to understand that everybody recognizes is my son was born with severe neurological delays, which means when he passed away at 15, he was actually functioning at 4 to 6 years old.

Okay.

He was born with epilepsy. He had 2 different kinds of seizures that he had that we ultimately kept in check with medication.

Um, he was nonverbal. Uh, he did say a few words here and there, but for the most part, he didn't talk. Now, he would, you could ask him a yes, no question, and he would like make a sound like he was saying yes, but to say the word yes, no. Um, he said mama once, never said dad. his entire life. And that, that was for me as a man.

Uh, that was a little bit of grieving for me as well. Uh, just because if he ever said anything, I wanted him just to at least hear it once and I never did. I mean, at this point it is what it is, but you know, that was a little difficult for me. So he had the delays. He had epilepsy. He was nonverbal. He could walk with assistance, like me holding him up under his arms, but to walk on his own, no, he, uh, he was basically in a wheelchair.

Um, now he could army crawl like crazy on the floor, but like to stand up and walk. No, we personally believe some of his neurological issues were what were what was affecting his ability to learn to walk is what we believe. Can't say we confirmed it, but it was just a gut feeling that we had. So the neurological delays, the epilepsy, the nonverbal and the wheelchair bound, my daughter was born with all of those identical issues.

She was born Literally two years to two years apart, almost to the day. And she was born with all of those issues, identical.

And you didn't see anything in your family, um, history. Wow.

of all of this was my father was going through ancestry. com during the time. And he literally went back 10 generations and there's nothing, nothing that's not self induced like an alcoholism or something like that. And. But the other thing you've got to remember with like Ancestry. com, it wasn't up until probably about the 60s, maybe 70s, where it was okay to list, well, I have a son or daughter with epilepsy or cerebral palsy or down syndrome or one of those things.

So, Even though we're 2024 at this point, it's only been within about the last 50 plus years where it's been acceptable. So there could have been something that we just, we don't know about. Um, and even in my wife's side, they went back five generations and there was nothing. And my wife and I had two kids born two years almost to the day with identical issues.

Now my son, was born with a rare condition called Eagle Barrett syndrome. It's more affectionately known as prune belly syndrome.

 Eaglebert syndrome unto itself, there's kind of some big characteristics to it. There's a lot of little secondary things, but basically what happens is my son was born without any abdominal muscle, none.

So like you could lay him on the floor and the only thing between his midsection organs and the outside world. Were skin and the fascia that held it together, that was it. Like I could lay him on the floor and I could take my pointer finger and literally touch his, his large intestine, his small intestine, his stomach, his, like, all of his organs.

I could point him out to you, uh, from there. And then, so there's, that's the main characteristic. And then he had an abnormally large bladder that didn't want to drain on its own. At least the first five years of his life. So I had to give him a catheter every four hours to drain his bladder, 

So the kidney issue, the stomach issue, the, the bladder issue were all related to it. Um, he had a normal lung capacity, but he couldn't take that deep breath. So for example, when you or I would get a pneumonia style like illness. Because we have our core abdominal muscles, we've almost got that like cement floor that we can build pressure on to build that cough up to get with force cough stuff out.

Well, he couldn't do that. So at a certain point in his life, I had six respiratory machines in his room. So the moment I heard that specific cough, I would immediately start through my kind of my protocol if I start with this machine then I go here then I go here and I get through all that and then I eventually get to like a nebulizer which most parents know what that is.

I give him a breathing treatment and I hope that I get ahead of it. If I don't, then ultimately I'm taking him to the hospital and he's getting admitted. That night, and we're staying six to 10 days every time this happens and for the first six years of his life, we were in and out of the hospital, the ICU specifically once every six months.

Wow.

And

on any, on, on anybody, but then on top of it, you also had your daughter that would require special attention, maybe not as, uh, intricate as that, but certainly more than your traditional child.

what I will, two things I'll say about that is one, you'd be amazed the pushback that we got saying that we're going to want to have another child after having our son. And all this came out. We always knew we wanted to have a second child. Plus all the research I'd done. Everything said there's no guarantee that you're gonna have another child with all these issues.

None. The, the percentage of that happened was so minuscule. I honestly probably should have played the lottery after it happened. And honestly, even after my daughter was born, for the first six months, she was the normal one of the two of them. But when issues started coming out, it was the pediatrician that said if you're basing Your daughter's development on your son.

She's going to look normal, but in reality she's delayed. And from that point forward, that's when the snowball started rolling for her. And we started finding about seizures and delays and non verbal and that kind of thing. Wow, that is, that is a lot.

that's a lot of stress on a parent and on a person. Were you able to do any self care or anything for yourself during this time? How did you, how did you cope with all of that?

this kind of goes to the, I guess the primal roots of just being a man. A lot of it I compartmentalized. I kind of pushed away. It was one of those. Yeah, I've got to deal with it, but I've got more pressing issues because my son's got issues. I've got to take care of my daughter. I've got to make sure Because my wife at that point was the breadwinner.

So my goal of being home was making sure she was well taken care of enough so that she could perform her job well enough to not worry while she was at work of what was going on. 

Right. Right.

And so, um, um, yeah, it was, it was a lot of compartmentalization and, you know, the term that I've coined for years over it has been, you know, this is just another day. I've got to kind of muscle through it.

I mean, I don't have any other choice. Uh, you know, my kids need their care. I, you know, with my son, there were times in the blink of an eye, I had to make split second decisions. And even before my son passed away, I, there were a couple of times I had to do things to save his life.

Wow.

and so it was just one of those.

I was always in go mode, you know, from the day, from the day we found out after my son was born of all of his issues to this day, I still have sleeping issues. I don't think I've slept well through the, through the night much in 20 years.

How could you? How could you? Really? I mean, you're always on alert.

Now, I'm going to fast forward, because you had said that you were with him when he passed, and I think that is a blessing, as sad as it probably was, it was, it was a blessing. Um, how did you, as a family, move through that whole process?

Um, I mean, for anybody, it would be difficult, uh, at least for the day of, because I was, I was in the ER room while they were working on him until they pronounced him. I was, I can remember everything in vivid detail down to the most minute thing. One, one, because it's my son and two, that's just how my brain works.

But, um, You know, for me, there was a lot of compartmentalization again, because I needed to know answers like in that moment, I needed to know what they were going to do at that point, what the next steps were, who I needed to call for like a funeral home, you know, how am I going to get my son home? And then, you know, when we got home, it was kind of talking to the funeral home, what are those next steps?

So for a couple of days there, I was. hyper focused on getting them from the hospital, the funeral home, funeral home into whatever, what we're going to do to the services, that kind of thing. Um, you know, between my wife and I, I'm the more outwardly spoken when it comes to emotion.

Hm. Sure. Sure.

You know, at home, did I break down and have moments where I was like, like it punched me in the gut?

Yes. Would I do that out in public? No. Um, it was more of a home thing. My wife's a little more quiet unto herself and she has her moments and, you know, Neither way is bad. It's just different. Um, and so I had many moments I was sitting on our couch on my laptop, you know, I'd watch a Facebook reel that had something related to like my son and it would just hit me like a Mack truck.

And I would just be bawling because, you know, because it was so recent to everything that had happened. And, you know, my wife just wasn't necessarily that way. And. That happened for at least the first nine months to a year, maybe a little bit farther. Uh, but we, you know, we talked with each other and, you know, we confided in each other and I mean, that's kind of how we got through it.

And I mean, we, we are strong in our faith, uh, in our belief system. In fact, my son passed away on a Friday. We were in church that Sunday. In fact, the one of the associate pastors who normally walks around and greets everybody before the service starts, he literally looks at us. At us and went, why are y'all here?

Mm hmm.

said, you're a pastor that is teaching faith. You know, we're faithful. Where else would we be? 

And so, and he just kind of looked at me and you could see the light bulb click in his head and he was just like, well, that's a good point. And I said, yes, it's, it's tough, but we would rather be here.

Now, how did your daughter do with it? How was she, was she able to process things?

Um, she did in her own way. Uh, when the day that it happened, she got sent to school. So when we came home that afternoon, she had no idea. And so she comes home, and my daughter always knew that when I took her brother to the hospital, which she called Bubba, because that was the name she could pronounce, When I took her Bubba to the hospital, she knew that I left with him.

I stayed with him. I came home with him. And so when she saw me and her mother here and our son, not with us, you could see the wheels turn, like, where where's Bubba, I don't see Bubba what's going on. And so I had to figure out a way to dumb it down, if you will, to explain in this most simplest concept of.

Why her brother wasn't there. And for the longest time, I felt like she blamed me. And I mean, I don't take offense to that. She didn't know any better. She just knew one thing and that one thing wasn't happening. And I probably six months there. I thought she was angry with me. Like, how could you not bring my brother home?

And I told her repeated times, you know, girl, if daddy could have brought your brother home, I would have much rather brought your brother home.

Right.

And so, and she would have moments here and there where she would just add the blue, just start bawling.

So, she

that grief?

Oh. Okay.

Was that grief? We don't know. We associated it with it because she, she never used to do that before.

Okay.

And so we associated with grief. Now, one of the things that we did is we bought a, we, we bought a like stuffed pillow animal that had like a Superman figure on, on the bottom with a superimposed head of my son on it.

Uh

And so she, she holds on to that all the time.

Oh, that's precious, actually. That's really precious. So to help with the grieving, you started Letters, um, for Zach, was it Letters for Zachary?

Letters to

to Zachary, excuse me. Letters to Zachary. Um, tell me how you came up with that and what kind of precipitated all of that.

Well, I've always been a proponent of therapy. Uh, I, I believe that we all have seasons where we may need assistance and just life and social things.

You are unusual for a man. Just kidding. But, ha, ha, most men do not believe in therapy. Ha,

Several sessions after my son had passed away, she goes, have you ever thought about journaling? And my ironic answer was, yeah, I don't know if writing is my thing.

I don't know if that's something I want to do. And she goes, well, keep it on the shelf. You can come back to it later. It's kind of a mindfulness activity. You can get it out. And whether you share it or not, she said, at least you're getting it out. And she said, you could delete it or Burn it in a fire or something like that.

And I said, okay. And so for probably nine months after the fact, it sat on my side table. And then just one day I was having a really rough day and I opened up a word document and just in true English form, letter, date, name, dear Zachary, that kind of thing, I just started writing my, uh, just raw, gory, guttural feelings of how I, how I, what I was going through in the moment.

And I wrote those for days and days and days. And one day I found a group on Facebook. Cause you know, you can find a group for everything on Facebook. Um, and there was a woman that was the moderate, uh, admin of the group. And I got to know her really well. And I said, do you mind if I post a journal entry?

And she, like probably most women went, Oh yes, we'd love to have it. We get, we so rarely get those. And, you know, in the moment right before I posted, I thought I have to mentally prepare myself. I'm either going to get a good response or I could possibly get a negative response. And I have to be mentally prepared for that in the mental state I'm currently in. And so in my fashion, I just kind of went, screw it. I'm on posted anyways. Let's see what happens. And so I did, and I almost immediately got a massive response in this group. Positive, but a massive response. I, I had so many women in this group go. We don't know each other. I have never told anybody what what like kind of the deepest darkest feelings I've been feeling and you have hit the nail on the head word for word.

She said, it's like you have read my mind. And I said, well, I appreciate it. And I said, it's inspired by my son. And I'm glad it resonates with you. I said, I said, I'm just one of those. I believe people need to see the ugly side of grief. I'm

hmm. Mm

I'm very pro that. And so I kept doing those over the next several months and every time I was getting these responses.

 Finally, someone said, have you ever thought about doing like a Facebook page and then you can just copy and paste what you're writing and then you're not necessarily creating more, you're just kind of moving it over.

Well, I think the more we speak about it and the more we talk about how important emotions are for humans in general. I think that's what it is. Emotions are part of the human experience and Sadness and grief and joy and anger and jealousy, all of those are things that sit within all of us and need to be acceptable to be expressed and worked through in all of us.

So I thank you so much for sharing that very tender space and I'm so sorry for your loss of Zachary. I, I can't, I can't fathom, but we appreciate you sharing everything.

Well, thank you.

Thank you. Awesome.