Navigating Grief: A Father's Journey Through Love, Loss, and Legacy

0:00 Hello and welcome to Real Men Feel. I'm your host, author, coach and healer, Andy Grant. You can visit theandygrant.com to learn more about how I might serve you. Real Men Feel reminds men that the human beings and have the right to experience and express all of their emotions. We have conversations that most men are not having, but that all men and the women who love them can benefit from. My guest today is Jason Tuttle. Jason is a former stay at home parent and married father of two kids with multiple physical and cognitive disabilities. After losing his 15 year old special needs son in January of 2022, Jason decided to create Letters to Zachary, a project of eternal love and legacy, to share his feelings and grief while also helping others to see a glimpse into the male mind and how it grieves. Jason is very open and vulnerable in sharing his emotional pain and grief.

0:51 He offers insights for how women can best support grieving men, the emotion that most men typically lead with in times of grief, and has advice for men dealing with deep loss. Let's do it. Hello Jason, welcome to REAL Men Feel. Hello, thank you for having me. So you've got A and it's kind of what I love for real men feel a man shares his journey and how he's being of service to the world. And you are certainly doing that. So let's just jump right into it. Growing up, did you know? Did you always want to be married and have a family? Yeah, that was that was a a bucket list item for me. I always knew that I kind of wanted to have kind of the traditional nuclear family, you know, the three kids, the the dog, that kind of thing. It was always something I wanted, that more so than what I really knew what I wanted to do in life. What were your earliest hints that your journey and your role was going to be different than than that ideal? I've for as far as I can remember, I've been told I work really well with kids.

1:58 And even when I was like in my teenage years, people always told me that I acted older than my age, almost as if I was an old soul if you will. And, you know, even 131415 people always thought I was much older than what I was. Now nowadays people go, no, you look like you've got a baby face. And I'm just like, really, nobody else has ever told me that. But yeah, I've, I've, I've always been told that I, I've been kind of older than what I was. And so I knew that was something that I definitely wanted to pursue. So you you were a full time stay at home dad for for two kids. Yes.

2:39 And and kids with with serious medical issues. So how did dealing with all that? How did that reshape your perspective and even identity as a father? We learn sometimes in life, life throws you a curveball to backtrack just a little bit. When we found out that my wife was pregnant, which would would have been with our son at the time, she found it was actually her hairdresser that that actually called it because she went in to get her hair done. The hairdresser goes, you look kind of green, are you pregnant? And she goes, well, we've been trying, but I don't know. And she made her assistant go out and get a pregnancy test. And almost immediately it came up. And so she called it.

3:22 But my wife came home, we talked about, we were excited about it and I'll never forget it. She goes, well, what if we have a child that's got like medical disabilities? And my response was, well, if we have one, then we're going to have one. We'll just deal with it as it comes because I personally don't believe in alternative methods for those that may not want that. And so the joke that we, that we've gone back and forth on many occasions has been, well, apparently God hurt us because he obliged us with two of them. And you know, but to get back to what you were asking about, remind me of the question again. My brain just went blank. No, you're fine.

4:02 So yeah, so, well, let's get you, you became a full time stay at home dad. Yes. So, so first, like, why, why, why did you take that role? Well, right after my son was born, even though we knew of all the, the one issue that was confirmed and all the possibilities, I actually worked for probably two more years or three more years while he was really young. And fortunately for me at the first school I was at, because my degree is in physical education, I taught elementary school PE. And I was the quote, the quote UN quote class that they all wanted to come to, which was great for me 'cause I rarely had discipline issues. But one of the parents of one of the several kids I had at school who lived literally in a neighborhood like a stone's throw from my school, said that she would watch him during the day. So I wouldn't necessarily have to put him in like a traditional daycare because of all of his issues. And so she did that.

4:58 And it got to a point where like my parents watched them. And the reason why I left education was that last year I was in education. It got to a point where we were in and out of the hospital so much that I was, I'd burn through all my personal time on my sick leave. I don't think I used FM Lai might have, but so we got to a point where I was essentially working for free. And I was, I'll be honest, while I was teaching, I had so much going on at home that it was starting to show up at work. Like just the stress and just the weight of just everything we were dealing with. And it finally got to a point where like I talked to my principal and I said, what would be your thoughts if I decided to resign?

5:47 And that this was literally the middle of the year. And she said, well, she said, you know, I don't want you to leave. But she goes, I understand should you want to. And for those that don't know it, it it, for those of us that work in the educational industry system, whatever you call it, if you get into a contract year and then decide for whatever reason, no matter how noble it is, and you decide to resign in the middle of the year, basically you get blackballed from that county 'cause they do not like you breaking contracts, period. And I asked her, I said if I resign 'cause it was January, I said if I resign, am I going to get blackballed from the county? And she gave me her principal answer, if you will, oh, no, no, no.

6:33 And I knew in my head the moment I walked out that door, I'd never work in that county again. But he was in another hospital a ton. And I finally just, I called my wife from the office that day and I said, hey, we've talked about this. What are your thoughts? And she basically came back and said, well, we can never really be prepared for. We really just got to kind of RIP the Band-Aid off and just see how it goes. And so that was a Wednesday. By that Friday, I had my resignation on her desk. I was driving, I drove off and left. Now, that first month when I didn't have a paycheck, I kind of was pulling my hair out going, what did I do? But I mean, we learned to work with it. And that's kind of how it came to where I became a stay at home parent because even though I didn't have that income, we were actually kind of saving money and time and stress and all that with me being at home.

7:23 And then my wife became the breadwinner and started making wonderfully doing what she was doing. That kind of made-up the difference. So tell me a bit of of what Zachary's challenges were and what daily life was like for you. So he was born with a rare condition called Eagle Barrett syndrome. It's also affectionately known as Prune belly syndrome. At the time he was born it was one in 40,000 births that it would possibly occur. So the easiest way to explain it without getting all technical into it is at this point doctors don't know the official what starts. If they do know it's a kind of AGI issue. They do know it's related to the kidney. My son was born with one kidney that did sustain some damage while in utero.

8:12 That is a part of the prune belly. Also a part of the prune belly is he was born with an abnormally large bladder that did not get the sensation to go to the bathroom on its own. Meaning I would at least the first several years of his life, I had to give the catheter every four hours. And if I didn't prune bellied kids or Eagle Barrett syndrome kids are susceptible to urinary tract infections. And the reason for that, for those that may not know is when you the fluid that's in your bladder has sediment in it and if you don't get it out, it's that sediment that either irritates or infects and that's what causes a urinary tract infection. So every time I'd get drain his bladder, I would try to make sure I got as much of his fluid out of his bladder as possible.

8:58 Now some Eagle Barrett syndrome kids go have horrendously tough times with them. My son, on the other hand, because I was so proactive about it, I think we had three or four urinary tract infections his entire life just because I was so just like, you're not going to get this. So one kidney sustained in utero and abnormally large spider. The big issue that everybody notices is my son was born without abdominal muscle. He had none of it. So like no, no front muscle, no side muscle, no any lowered and above, none of it. Like I could lay him on the floor and from the outside, the only thing between the outside world and his organs was the skin in the white fascia that holds it together. That's it.

9:49 And like I could put him on the floor and from the outside I could literally take my finger and touch a part of his stomach and go, well, there's the large intestine, there's the small intestine, there's his stomach, there's his kidney. There's a, it literally like one of those biology class dummies that are that stand up on the front table that everybody looks at when you're in there. I could literally point out all of that. All of that that I just described was the actual prune belly or Eagle Barrett syndrome itself. The big secondary issues that I'm mostly dealt with. His lungs were normally formed and he could breathe normally. However, when you or I get a pneumonia or a bronchitis or even today a COVID kind of style illness, because we've got the abdominal muscle, we've got kind of that foundation or that floor where we can build pressure on to get that deep cough out. Well, he didn't have that.

10:43 So I learned very, very quickly that if he got a chest cold, if I couldn't get to it fast enough, we were going to the hospital and we were going to get admitted. I mean, almost inevitably. And literally the 1st 5 or 6 years of his life, we were in and out of it. And one of the ICU rooms at my local Children's Hospital every six months because of it. Now once we finally really kind of understood it, it's not in here anymore, but I'm like actually in the his room and on one of the other walls. I used to have this large shelving unit and I had like 6 home respiratory related machines that when I heard his cough I'd give the stethoscope out.

11:27 I'd listen to his chest and see if I could hear rattling. If I did from that point I would put the hill ROM vest machine on, which is what cystic fibrosis patients use. It would basically blow up and release a beats on the chest to kind of loosen it up. I would then go to an encephalator, which is basically a mass that would go over his like his nose and his mouth. It would, I hate to say violently, but it was very quickly would blow air in there and immediately suck it back out. It wasn't a pleasant experience. And it, what that would do is it would kind of suck that up into his esophagus, up into the like the base of his throat. The next step I would do is I would have a suction machine where I would take a flexible catheter, go in his nose, wrap it around his sinuses, go down into his, the back of his throat and suction it all out.

12:15 And then after that was done, I would take a nebulizer that everybody that has kids knows what that is and give him like a breathing treatment. And I would do that every four hours while I was at home. And if I couldn't get on top of it, I was going to the hospital and we were getting admitted. All of that was related to just the Eagle Barrett syndrome, the prune belly. So daily life sounds like you were kind of turned into a doctor. You were just full time medical care. Yeah, I I've said many times, I never thought in my wildest imagination of what I would have to learn about respiratory related issues, GI related issues, neurological related issues and a couple of other areas.

12:58 With all that going on, like, was it ever good? Were there moments like. Yes, there were even in the, I will say people always ask me about it and I would say probably the first four or five years are really stressful for me just because up until about that fifth year thing is secondary issues would pop up that I had no idea were going to pop up. So by about Year 5 or 6, I'd seen basically everything. So after that point, once it popped up, I didn't freak out about it because I I'd seen it before. But up until that point, every time someone would come up and just like, what's this?

13:41 How do I handle, what do I do? Do I need to go to the hospital? That kind of thing. But in between there, yeah, there were a lot of happy moments. My son was the most laid back, happy child, even through the difficult life that he led in the entire 15 years he was around. I think he cried twice. He was always happy. In fact, the story I tell people is there was a time I went to go, like give him a catheter. And for most men, if you tell them that you've got to give them a catheter, they kind of look at you and go, oh, what are you doing with that going down there? And but my son, we had done it so much that this was just daily life. And so he would literally get on the floor. He'd laid back, He'd put his hands behind his head and look at me like, well, old man, let's get this show on the road. I got things to do and it even when I would like insert things and all that, he would not flinch. Nothing.

14:37 I mean, he would. He was just, he was used to it. And how old was Zachary when you had your daughter? He was three, I believe because we always knew, even before all the medical issues, we always knew that we wanted to have more than one. In fact, when my wife before we got married, she point blank came up to me and said I want 4 kids. And it from a man's perspective, I went, well, let's have the first one and then we'll talk. I mean, it wasn't much of A stretch because I always, up until the medical issues, I always kind of knew I wanted 3. So going to a fourth one wasn't much of A stretch.

15:17 It was more the fact that how blunt she was about it. And I was just like, hello, He was two or three, I think, 'cause she's two years behind him. And as you can imagine, when we told our families that we were going to try for another one, you can imagine the backlash we got 'cause they're just like, you have all these medical issues and why would you want to add to that? And I, I told both sides, I said, look, I'm a researcher and I have researched and I've talked to people till I'm blue in the face. And they have all said, just because you have these issues does not guarantee that you're going to have a child that has any of them. There's a small chance, but it's so small that it's not worth not doing it should you want to have another child.

16:03 And so that that's kind of the resistance we came across. Yeah, I, I mean, I that that's my first thought too. Like, why? Why would you do this to yourself? Yeah. But was it just again that innate desire for for family and. Well, we, we always knew that we wanted our son to have a brother or sister, not to be an only child. I'm one of three. My, my wife's one of three. Like she's a cradle Catholic from the Northeast. So they're all like one of eight. I mean, they come out of the woodwork when we go up there. So we always knew we wanted to have at least more than one. And honestly, from my daughter, when she was born, she was considered the normal one, as crazy as that sounds. And the reason why we say that was because when she was born, we were basing her development on our son. Now, what we found out six months in was she was delayed. And like, I talked to the pediatrician who actually had a special needs, has a special needs child, and I said, well, why do you think she's delayed?

17:09 And she said, well, if you're basing her development on your son, she's going to look normal. But based on normal standards, your daughter's delayed. And it was at six months that the proverbial snowball started rolling downhill for them. And at the end of the day, once we had both of them, my son was born with Eagle Barrett syndrome, the rare condition. However, both of them were born, my son was born with a rare condition, but all the other issues, they were born identical to each other. And we still don't know why. Both of them were born with neurological delays, severe delays, meaning they both function about 7 to 9 years old, no matter their age. Both of them were born with epilepsy, meaning of the six different kinds of seizures I've seen, four of them in my house. Both of them were non verbal.

18:01 Both of them could walk with assistance, but basically needed a wheelchair to get around. And then as of two years ago or three years ago, genetics seems to believe that my daughter and even my son, even though now he's passed, may have another rare condition. And based on her comments, she seems to think we're not only #1 for her, we're #1 worldwide. And so we're still waiting on to see if anything comes to fruition out of that. So in the first probably five years of our marriage, we had two kids born 2 years apart having identical issues. So your stay at home dad with two children and to say special needs just sounds like the grossest understatement to describe anyone's family.

18:53 But how does that and maybe you don't have time to to even have thoughts on this or realize in the moment, but how did that change your perspective and identity as a father? Now I can look back on it and realize I was in a state of grieving, although I didn't realize it in the beginning. I was grieving the life I thought we were going to have versus the life we got. So for example, as you can see here and from other podcasts, I can run my mouth, I have no problem talking. But my son was non verbal. I taught physical education, thought my son might get into sports. My son could do no sports because of his issues. And so there were a lot of things, at least in that aspect that were hard hitting to me.

19:38 And like one of the things I always wanted, which unfortunately I never got was even though I knew my son was non verbal, there were he did say a few words in his life. And all I ever wanted was to hear him say dad at least once. And he never did. He said mom once and said something else once but never said that. And that was especially when he passed. That was a really hard pill to swallow for me. Even though I mean, I, I, you could see in pictures just what he thought of both his mother and myself based on his looks at us and kind of the non verbal cues. But you know it that that was just a tough pill to swallow for me. And so you, you mentioned that he passed when he was 15. Yes.

20:23 Was, was that a surprise? Did you know it was coming? It was actually sudden and unexpected, so I'll try to make this as simplistic as possible. So of all the issues that my son had, I knew all the different characteristics and what to look out for is should something pop up. Three days before he passed, they came home from school. I did my normal routine. I got him off the bus, got him in their lounge where, you know, gave snacks and all that kind of stuff. We'd lounge together. I made dinner. You know, he ate like a horse that night and usually in the evening I would put my daughter to bed 1st and then I would give him like about an hour afterwards, just give someone on one time with his mother myself, 'cause I love my daughter, but she can be a lot of times.

21:14 And my son, even though he couldn't talk some nights, he would give me this look of I need a break from her. And so that's where that kind of started. But so that evening, we brought him into the living, into our bedroom, and typically we would lay on either side of the bed. We'd put him in the middle and he'd roll back and forth and goof off with us as we were watching TV. We got ready to put him to bed. My wife went to go use the electric toothbrush, which he liked because of his sensory issues. And Torzan, he threw up a little bit and I looked at my wife and she looked at me and I said, well, maybe you hit the like the gag reflex and something was in there and it just came up. Didn't strike me as all, we put him to bed that night and he's always been a really good sleeper. Well, that night he was up and down most of the night, which is unusual for him.

22:02 And so the next morning I told my wife, I said I'm going to let his teacher know, I'm going to keep him home. I don't know. I said he may have like a 24 hour virus, which is what he got in many times in his life. I said he's just got to work his way through it. There's not a whole lot we can do other than just to watch him. And so we got my daughter on the bus that day. I told his teacher she's like, great, fine, we'll see you the next day. And then that day, he absolutely refused to take a nap. He didn't really want to eat and drink that day. And like, I looked at my wife and I said, you know, if I'm not feeling well, if I don't want to eat and drink, that's fine. I said I'm OK with him not doing this for a day. I said, but if he starts doing this tomorrow, it's going to catch my attention that something's not right. Because typically even though you're sick and all that, you know, you give it a day 24 hours ish. And then at least after that point, you'll start at least wanting to drink something because you just haven't had anything in that length of time.

22:59 So he didn't want to take a nap. He didn't want to lay down. And he was, I wouldn't say he was cranky, but he just, he just looked uncomfortable. So I, I, that evening I did the same thing. I, in fact, I put him to bed the same time as his sister and he immediately got quiet and I just looked at my wife and I said, well, he's just got to be exhausted because he was up all, literally all night last night. I said he was up all day. So he's been up all like 30 something hours, so he's got to be exhausted. I bet you and I said I'm going to keep him home. Let's see that that first night was Wednesday, that was Thursday and I said, well, I'm going to keep him home on Friday. I said should. I said at least at that point if he's not feeling any better, we've got the weekend to recover and we can go back on Monday. I said, or if something should, if it should anything change, we're home and I can take him to the hospital or should we need to.

23:54 OK, wonderful. So that Friday morning we get my daughter up and going, get her on the bus and I walk into his room. And typically when I walk into his room, he's happy and excited. He's bouncing on his bed, he's clapping his hands because you know, I'm getting him up and he's wanting to get his day started. So I walk in here, which I'm in his room and I open the door and he's awake with his eyes open. And I wouldn't say he's lethargic, but he he just kind of looks at me. He doesn't really bounce, doesn't really clap his hands and that kind of catches my attention. And I walk over to the side. I off the of the bed that I get him up on. And I notice he's got a dark green streak coming out the side of his mouth from where he'd been laying.

24:37 And I look at it and look at my wife. And I said, I don't know a ton about the human body, but what I do know is the only thing dark green in your body that would come out of your body's bile and why is it coming out of his mouth? I said, this is not good. So I get him out of bed and he's kind of floppy, like he can't hold himself up. And that didn't really strike me just because there'd been some respiratory stays where he was that way. And I thought, well, maybe he's really getting sick and maybe I need to take him to the hospital. I take him out in the living room and I go through kind of my mental medical protocol and I listen to his chest. There's nothing in there. I Cath his bladder. I don't get a whole lot out. I look at all the other signs and the only thing that stands out to me is because of his Eagle Barrett syndrome, his midsection is very pliable, almost spongy because there's no abdominal muscle there. And I go and feel it and it's literally like cinder block wall rock hard.

25:32 And I, I look at my wife and I go, this is off. Something's not right right here. And I and I don't know what it is. And so we're sitting there and in the, in the moment, I thought it was like 30 minutes, but in it was more like 2 minutes. But in the two minutes I was there in my brain going, what do I want to do? What do I want to do? It was just a hunch. I went, I'm taking him to the Children's Hospital. I don't know what this is. I need to get a professional to look at this. So we get him dressed, I get him in his wheelchair, I get him in the van and I do like 90 miles an hour up to the Children's Hospital. And we get up there, we get into the parking day, I get his chair and I go to get him out of the van and he's really floppy at this point.

26:13 And this catches my attention. So I get him in his chair and he looks like he's like falling asleep and waking up almost in and out of consciousness kind of thing. And I'm trying to keep him awake 'cause I don't know what's going on with him. Kind of like, you never want a person that gets a concussion to fall asleep right afterwards. And what I didn't realize in the in the in the moment, at that point, from the time I drove him from my house to the Children's Hospital till we got in the ER, he was literally dying right in front of me. I had no idea in the moment, but I get him in the chair. I get him up to the ER and I skipped the line like the right like I need medical attention and before and like the security guard comes over to me as if to say, you need to get line. And he walks over to me and I go, I don't think he's breathing.

27:01 I need help immediately. And so he gets the attention of the nurse. She looks at him and she goes follow me. Now I've been in this this hospital 100 times and this is the first time I've ever gone at a full run through the ER waiting room into the ER to a trauma room. I mean like as fast as we can go. So we get into a trauma room. I instinctively like unbuckled from his chair. I pick him up, I put him on the Gurney that's in there and I back out of the way in hopes they'll let me stay in there cuz he's non verbal. He can't tell them what's going on. And so I'm hoping that they'll let me stay there so I can at least say, hey, this is what's going on. This is why I brought him here.

27:45 Luckily, there's a trauma room right next to us at the doors are open, it's empty and I back off in there and they let me stay in there. They immediately cut off all of his clothes. And the first thing that they did that struck me as they went over to his knee, got this straw and literally drilled into his knee just immediately like that. And later I, I said, what did you drill into his knee? And I said, I said, I've never seen that before. And they said, well, that's a port to get into his system. When we have patients like this, we try to get antibiotics or just something in the system to see if we can help combat whatever we think we're dealing with. And it caught my attention because they gave him no pain meds and like, he did not flinch.

28:26 And I and I tell people, I said if you had someone drill into your bone, into your leg with no pain meds, you would have come off the table. It would have been excruciatingly painful. And he never flinched. So they cut off his clothes. They immediately intubate him, like putting the tube in him to get oxygen in him. And they put like all the things, put the monitors on him and they're looking at him and like the head of yard dot comes in there and she bark shorters at him. And like 2 minutes in, they start chest compressions, doing CPR. The heady Ardot comes over to me in the other room and she goes down to the minute, how long has he been this way? And I said, you know, X number of minutes plus or minus like 2 minutes.

29:07 She goes back over and bark shorters at and then she walks back over to me and says to the to the best of your recollection, what was the scenario that you decided that you needed to bring him up to the hospital for? And I tell her everything that's going on. She goes back in and bark shorters at it. During all of this, they're, they're rotating, doing chest compressions on them. They're you know, there's to this day, I can remember looking in the room and there was sets of 212345 sets of two people. And I can tell you exactly whatever what every set of two people were doing and they're working on them. And probably about 3 minutes goes by and they get the paddles out, which you know now they're like the pads you stick to people, not the old ones where you put the gel on them. And I hear him yell clear and they shock him and literally he lifts off the table and goes back down. Well, as I'm watching this, I turn my attention to the monitor because I'd, I'd, I'd looked at that monitor 1000 times because of all of his respiratory stays.

30:08 And I was looking at his heart rate while they did it. And it literally went boop and goes right back to what it was doing. I mean, it was still going up and down, but it was faint. And in my brain at the moment I go, he's not coming back. Now I don't react to it, but I go, he's not coming back. And they continue to work on him. And it come at the end of the day, it came back. I think they shocked him like four or five times. It was, it was a good number of times. And they get towards what turned out to be kind of the end of them working on him. And the head ER dot comes over to me and she said, well, I can shock him again. But she said, I think the results going to be the same. And I said, well, this is out of my medical wheelhouse. I said, do what you think is professionally necessary. And I think they did.

30:53 I, that's the one part I don't remember. I think they did. And then she pronounces them and offers her condolences. And I, as one could imagine, I turn into the other room and I have a moment for a second. And then I immediately clear it up and I, I call my wife. Now my wife at this point is working from home. All she knows or is thinking is I'm taking him up to the hospital. I'm most likely going to get admitted. We're going to be there for our seven to 10 days, and then I'm going to come home. Well, I had to tell her that her son was dead on the table. And I'll never forget the sound that she made over that phone when she finally took a breath to, like, gain her composure.

31:36 I said, 'cause she was working remotely, I said contact your boss, tell them what's going on, leave work, call your parents, 'cause they live close to us, have them drive you up here. I'm a very kind of military telling her I was just like, you're not in the state to drive, you need to be up here, call your parents, OK? And she did that and that came up. I then had to call my mother who had watched him many times over, over his life. And I'll never forget her response. And, you know, I had to compartmentalize in that point. Now, later on down the road, my mother said, I'm curious, how long after Zachary passed away did you call me?

32:17 And I said, about 10 minutes. And she goes, you were eerily calm when you called me. Zachary had literally just passed. And it's like you had no emotion. And I said, well, in that moment, I knew I had to talk to Jennifer. I knew I had to talk to you and I needed information. And I said if I were a blubbering idiot, so to speak, I wouldn't have been able to get it. And I, and literally after I got off the phone, the care team came in there, offered her condolences and she and she asked me something. She said, you know, we're here to get you through this next process. And I said I literally stopped in her tracks. I pointed at my sound and I said, this is going to sound cold and callous and I don't mean it to be.

33:01 I said, but I will deal with him in a minute. I said I've got questions that I need answers to. And she goes, OK, what would you like to know? And I rapid fired off literally 20 questions back-to-back back, back, back to her. What was going to happen? If I like what happens from here? Where does my son go? Is the corner going to do an autopsy? If he does, what's the protocol for it? If he doesn't, why is he not doing it? I said, if he does do a autopsy, what's the turn around time? If he doesn't do an autopsy, who do I need to contact here for the Funeral Home? And like, she even took a step back, 'cause like I was, I was just, I just kept going. And I said, I don't mean to be. I said, but right now the thing that's going to comfort me is information. And she goes, OK, And you know the rest. She comes back and tells me all that. And, you know, his mother comes up and we finally decide we're going to leave.

33:56 And the head of your doc comes over to us. And I literally look at it and said, look, I said this is devastating for us. And I said y'all did the best y'all can. I said I don't want you to think anything other. I said the fact that y'all work for 45 continuous minutes to try to save him was much longer than I ever thought y'all would work. And I said I sincerely appreciate all y'all's effort. I said I'm. I said don't think I'm upset at y'all that y'all didn't save him. I said I get that he was basically too far gone once we brought him in here. And then typically what people will ask me, they say, well, what was the hardest thing about that day outside of losing your son? I said two things.

34:39 I said while I was waiting for my daughter to not my daughter, my wife to come up. I said I noticed how cold he got, how fast he got that way. They'd literally stopped working on him and it was literally like 3 minutes. He went from warm to cold. I said it was that fast. And I said the other thing that I'll never forget was when we left the trauma room, I had to take all of his cut off clothes, put it in his empty wheelchair and wheel it through that whole hospital, go down to the, our the van, put it in the back of our van. And we had to drive 60 miles home and miles home. And we were like in dead silence the entire way home. I said I'll never forget those.

35:25 That's a lot. It is. So I just want to back up a little bit. Sure. You're probably unconsciously grieving the life you thought you would have with these two special needs kids and you again to sudden and shockingly lose your son. It sounds like you gave yourself about 30 seconds to feel that and then information mode being the rock and forming the family. Exactly. How long was that brief amount you gave yourself? How long did that? Was that all that you gave yourself? How long did that last?

36:08 When when I got home, as you can see the Z behind me, I'm in Zachary's room. We got home and you can't see from here, but there's there's another wall in here. And I wheeled his wheelchair in in the corner. It's somewhere behind me. I parked it there. In fact, it had that wheelchair has not moved since the day I brought it in here, since the day he passed. And I came around to the side of his bed right here. And I looked at it before my wife kind of followed me into the room. And it was at that point it hit me like a Mack truck, like almost knees buckling kind of scenario. So we did that.

36:49 I did that for a few minutes and then we regained composure because we my parents asked us to come over to their house. Like my whole family was over there. And we got over there and we walked in and my brothers and I have a have a pretty good relationship. Are we buddy buddy? Like do we hang out all the time? No, but like I walked in, I saw my whole family and the first person I saw was my eldest brother. And I don't know what it was about it, but when I saw him as I was walking into my parents room, like my knees buckled, I like I lost it and like he hugged me and all that kind of thing.

37:33 And I and I lost it for a few minutes and I regained composure for that moment. And so I went back in there and as you can imagine, I had the whole family kind of staring at me and, and you know, they were understandably, they kind of wanted to know what was going on and how it happened. And so I tried to tell, but as anybody in that state, I would get through a few words and I could feel that like trembling, like I was going to lose it again kind of feeling. And so that was the longest conversation I think I've ever had. And I did that. And essentially what had happened next was we went home. My daughter at that point had no idea what was going on.

38:16 All she knew was I took my son to the hospital and that she probably thought in her simplistic understanding, I was still going to be there. And so I had to inform her when she got home that her son had passed away, her, excuse me, her brother had passed away. And that was difficult just because of her with her delays, it was hard to make that a simple concept. And then after we did that, we went to the Funeral Home and got information was kind of the rest of that day. Did you and your wife grieve differently? We do.

38:56 She's the quiet and kind of unto herself and she'll go off and have a moment to herself kind of thing. I, at least in the house, I'm very visual. It doesn't matter who's around. If I, you know, if it hits me hard enough and I'm just bawling, crying, it doesn't matter. That's just where it hits me. Now, am I that way out in public? No, I'm pretty reserved out in public. But in the four walls of my house, no. I'm very, very visual, if you will. Is there anything you wish women understood about men in grief? Yes, what women need to understand is despite whatever, I don't know what you know, if you're a woman listening, I don't know what your situation between your significant other is. You may have a significant other that opens up, you may not. But let's get past this fallacy that men don't have emotions and men don't get emotional.

39:58 We do. We just. Pick and choose where we do it. A lot of us hold it in because that's what we've been taught since birth. To give a great example, I'm 49 years old. I'm generation X. I'm part of the, you know, rub some dirt on it, walk it off generation or you're crying. Give me, I'll give you something to cry about kind of generation is what I'm a part of. And so I was always taught, sure you can be emotional, but it means be short, brief and then you need to get back to whatever you were doing. And the, the best way I described it is like you get 3 days of bereavement from your work. That was about the amount of time that me as a man that I should be grieving and that it should be back to normal.

40:42 And so, you know, I tell women, especially from some of the things I've just seen in society and heard these days, if you want men to be emotional and grieve, you can't dictate how we do it. You can't say, well, I want an emotional sensitive man. And then when he does it, you ridicule him for being weak or you or you ridicule him for I can't believe you're being emotional about that. I can't believe that's bothering you. One of those style comments. And so if you expect your male partner or significant other to be open ears and listen to you then and not talk while you're going through your entire cycle of whatever's bothering you, you have to be willing to do the same for us. If you don't, it will not work.

41:36 And a lot of men, to use a sports analogy, a lot of men kind of give the whole 3 strikes and you're out kind of ideology. You know, you may not think we we remember something that you, but we, but we don't forget it. If you downplay, then that just tells me as a man, if you're saying I can't believe you're getting upset about it, that's just telling me from your point of view that my feelings don't matter as much. It's only about your feelings and my feelings will never matter as much. You've got to get out of that thinking. That's typically the ballpark of what I tell a lot of women. Was your willingness to feel in privacy always there, or did it take this this gut wrenching experience to make that true for you?

42:27 No, I've always been kind of, I hate to say it blunt, if you will. I, I was always the person that between the groups of people I knew, I had the nerve to say what everybody else was thinking. Like it didn't bother. Like if I said something, it offended someone and it was like a staunch thing that I believed. It didn't bother me. Now, I mean, I wouldn't necessarily rude about it, but like I just I said what I felt. And especially with the grieve, at least initially, it was just a family. It was until probably a year into that I got to where I'm at today with everything I'm doing all. Right. That, that was my next question. So Zachary's been gone just over three years, is that right? Yeah.

43:11 Just over three years. So what? What was what? Was there a pivotal moment that made you put that grief into something else? Yeah, it was counseling. I've always been a big proponent of therapy and counseling. I believe we all go through seasons where we may need it. I definitely, I up until about two weeks before he passed, I just finished like a year of going once a week and I'd literally two weeks before called up my counselor and said, hey, I think I've kind of cycled through this should I need it again, I'll call you back in on your waiting list, that kind of thing. And there was a lot of unintentional grieving stuff I was dealing with pre his passing that I finally got through for two weeks later for actual grieving to start as life would have it. But so I got back in to see her and I was seeing her weekly at that point.

44:07 And probably about the almost two months in one of the sessions, she looks at me and she goes, have you ever thought about journaling? And the irony of that statement now because of all the writing I do was I said, you know, I don't know if writing's my thing. I literally said those words to her and she goes, well, she said put it on the back burner. It's more of a, a distraction, a mindfulness activity. It's more to get it off of you than like to share it with people. And she said you can if you want to, but it this isn't designed for you to like share it with the world unless you just, you feel like you need to. And I said OK. And even from that point, I put it kind of on the mental back burner for nine months after that point. I, I thought it, I resisted it, I didn't want to do it. And ultimately it was, I was on Facebook, I was watching a reel and honestly, I don't remember what the reel was about, but something in that reel caught my attention that reminded me of my son.

45:07 And I literally sitting in my chair, just, I lost it for a minute. And it was in that moment that I opened a Word document and improper like Oxford English style. I, I wrote a letter to my son and I verbally vomited on a page very open, very raw, like if I felt like I needed to drop an F bomb in there because that's what I was feeling. That's what I wrote. And I did that several times a day for several weeks. I and I, for, for whatever reason, I saved them all. I don't, I honestly, I don't remember why I saved them, but I did. I mean, I'm thankful I did now, but in the moment I was just, I don't remember what prompted me to. So I wrote those letters for weeks and weeks and weeks and one day out of the blue, I was in a, a, a Facebook group that dealt with grieving the loss of a special needs child. And I got to know the female admin very well and got connected with her on Facebook and, and I messaged her and said, Hey, do you mind if I share one of my journaling entries?

46:12 And literally before I could finish, she was just like, yes, we would love for you to. She said, we rarely, if ever get men in here kind of giving their side of this journey. We'd love to hear it. And I said, OK. And so I copied and pasted in there. And right before I hit Santa, I paused for just a second. I thought, well, as noble as this is, it's still the Internet. And am I in the mental space? Should someone in this room come out and give me negative comments? Am I going to be able to handle the negative side? Should I get it and not jump down someone's throat because I can't handle it? And ultimately I went, screw it, I'll do it anyway. And I, I submitted it to the group and it was probably that evening, I, I think I'd gotten off social media and I got in that evening and there was a massive response in this group.

47:04 And thankfully it was all positive. And I, I told I to this day, I've told the, the admin there, I said, if I hadn't gotten that response, I said I wouldn't be here, I wouldn't be doing what I'm doing. I said, because if I'd have gotten a lot of negative, I would have probably dropped it. But I had women in there saying, the one I'll never forget was I had this one woman go, we've never talked. I've never expressed to you how I felt. I've never told anybody what's deep down inside. And this letter word for word exactly explains how I feel every word of it. And I said, well, I appreciate that it resonates with you. And I said it was inspired by my son passing, unfortunately.

47:48 And I said I'm I'm glad that you got something out of it. And so that's kind of where the ball started for everything that's gone on up to this point. Was that very first just kind of response I got? So today, what is letters to Zachary? Letters to Zachary is a the the first thing that was that still kind of the main place that I post on as a Facebook page. That's where I do the just about everything now. I do all different types of form. I do the in the forms of letters. I do in the forms of like poetry and prose. I take like I follow a lot of a lot of like well known people in the grief community.

48:33 And I will like share, like where you can comment above and I'll take whatever their stuff is and I'll kind of give the mail commentary to what they've written to give people like a different perspective from what they've said. I've done memes, I've done short videos. I mean, I, I've, I've kind of learned how to do it all on there just to get different kind, you know, for those that like videos versus reading and those that like commentary versus videos. So there was the Facebook page and then I moved over to Instagram because then I could do all the like, picture stuff and commentary. And then I'm now on, I've been on TikTok and I, I, if you'd have told me years ago that I had 49 years old, I'd be on TikTok doing videos. I, I just told you no, but here I am. And, and I got in there because someone I know that's on there said that there was a huge grief community on there and I had no idea.

49:33 And, and then it has then subsequently, I now have a professional website, letters to zachary.com, where I've got like all my social media with the media appearance. I've done how to get to everything I'm a part of. And then kind of I've got resource pages on there, although right now they're still kind of small at this point. I'm, I'm kind of adding them as not as I'm finding them, that kind of thing. And then last but not least, I am also, I'm also published. This is the letters to Zachary grief coloring book. The reason why I went with a coloring book versus like a biography or a book style kind of thing is one everybody does a book and I I may eventually get there, but the brainchild came from my son.

50:29 Zachary has a sister. And I was thinking one day I was just like, what if I was a different family that had a child that didn't have the issues that my daughter does? How would I explain this to them? And what would I need to kind of soften the moment to be able to explain this to them? And the coloring book was the idea. And I did that because first of all, who doesn't like the color, whether it's adults or children? Second of all, coloring is is a mindfulness activity is destressing and for the simplistic term terms is distracting if you will. And from the parents point of view, I go, well if I can get my daughter to color that will distract her enough to give me time in my brain to formulate how I'm going to explain difficult topics and simplistic ways to my child. And then last but not least, several entries are mine in there, but I did a survey and literally all of the other entries in there came from a survey I did of people that I've met online or I know personally that have lost a loved one. And what it basically did.

51:41 They entered all this information, the illustrators took the information and they either made an actual coloring book scene, they're related to their information, or kind of a collage in there. And then on the Backpage, it listed who the loved one was and like positive things about him, like favorite sayings, favorite quotes, just things they liked, that kind of thing. So I could make it a active and interactive memorial. In fact, like, here's one of the collages they did for someone. Here's the what they wrote about them. Well, that's a quote of mine. Wow. What's the luck that I went to mine? They did that.

52:22 There shouldn't be one here right soon. Yeah. This one was a different person. This is actually a coloring book scene because they like camping, they liked outdoors and they're they liked music, as you can see. And inside the the kick drum, there's something. There's their initial. And so it was just something that I could do to like hold in my hands of the legacy for my son as well as the people that have loved ones in here now. They have a tangible legacy for them. And it was a way that I could give back to the grief community because the grief community has been priceless in their help to get me to where I am today.

53:08 What advice would you give men who are dealing with deep loss? To be blunt and simplistic about it sucks. I mean, it's terrible. It's the worst thing that you can go through. You know, if you're dealing, especially recently, a terrible loss, if you're the type of person that you need to go in your garage and you know, like punch a hole through the drywall, then go ahead and do it. I mean, that's perfectly normal. That's dealing with the grief that comes out. And typically in man, it always starts off as anger. I don't know many men that it doesn't start off in anger, but have your moments of, of anger, have your moments of just desperation, that kind of thing. But understand at the at some point, the only way you're going to get through grief is to actually grieve. And now when I, when I say some point, it is perfectly normal to kind of be in this grief state at least the first year. So don't.

54:09 So if you think after six months, what's wrong with me? No, I know a lot of people took them that entire first year to finally kind of maybe not get through, but kind of get over that first hump to at least have a a little better understanding of it and understand that a lot of the things that you're going through, it does not make you abnormal or unusual or weird or anything like that. If you're the type of person that you want to kind of be reclusive for a while, that's normal. I've done that. If you want to stay in bed, that's normal. I've done that. If you don't want to deal with people, I've done that. Now the last one I'll say, but, but I'm going to say something afterwards, at least for me and grief, there was a period of time I had a lot of really dark thoughts relating to it. And when I tell people that, typically their ears perk up and they say, well, are you suicidal? No, I'm not.

55:08 But when you're a man who's lost your son and even daughter, but, and you realize that you know you, you've done things out of order, the out of order, the, the lineage on that line has stopped all those stereotypical things. Sometimes those thoughts come into your head. And I tell people all the time in short spurts. In my opinion, that's completely normal. If it gets to where it's becoming more and more and runs your day and all that, at that point, I tell people all the time, seek help. And I tell people all the time, even though I say that 99.99% of men would never do anything like that. But for some of us, that's a natural progression to kind of get through the dark times.

55:57 And so I just, I tell again, I tell men all the time, if you think it's unusual or the, the, the other people don't do it, think again, because we've all done it. Yeah, yeah, I want to read right that dark thoughts, thoughts of ending things normal. Yeah. If and when they become plans, that's the that's the danger zone. That's when really get help. Don't keep that to yourself. So through all this, I don't want to, I don't want to lose you without asking first. How is your daughter? She's doing well.

56:37 I think she understands it. For a while there, when I got home, she always knew that when I took she called Zachary Bubba because that was the word that came out. She always knew that when I left with Zachary that I would go there. I would get admitted with him, I would stay with him, I would bring him home. Well, this time I took him, but when I came home, I was without him. And so when she came in the door, she had this puzzled look of, well, where's Bubba? And at that moment I had to go. Well, girl, unfortunately Bubba's no longer with us. I said. He's in heaven now. I said, if Daddy could have brought him home, Daddy would have done everything in his power to bring him home. I said.

57:20 But Daddy just couldn't do it this time. And I think she kind of understood in the beginning, I and I overtime I said it many more times to her and even a little more simplistic terms to say that she ever really completely understood it. I don't know. I think she might have, but I can't 100% say that she had. I know for a long while. I know she was angry with me because I didn't bring him home, which is fine. I, I had no issue with that because that's how she dealt with it. But there's still times here and there that she'll got, she'll randomly just go Bubba, Bubba and, and just kind of call out his name.

58:05 It's kind of how she does currently. So you've mentioned God a few times in our conversation. Has this, well, it's in this this has your life strengthened weekend done anything to your faith? Faith has always been a strong component of what we've gone through. I will be 100% honest, I've never like left the church and nothing extreme like that. Have I strayed from it at times when I've had questions? Yes. But I've always come back. Not to get preachy or religious or biblical or anything like that. But yes, my family over the last 20 year has had a lot of trials and tribulations and hardships.

58:52 But I related for those that are familiar with the book of Job, a character in there that faced basically ultimate devastation, but still had faith in God and you. Now do I think I'm on the level of, of, of Job? No Have I faced tremendous devastation? Yes, but it's more the concept in that book that faith was never lost even through the most of difficult times. And as a parent, losing a child, in my opinion, is probably the most difficult time you can imagine.

59:32 And even though it may not have always been on the forefront, it was never lost. Jason, what's the best way for people to find out everything that you're up to? You can go to letters to zachary.com and Zachary is spelled ZACHARYI know sometimes people put an E on the end. You can go there and you can find out about the Facebook group and the page and all my other social media and media experience and all that stuff. If you don't want to go there, you can go to the Facebook page of the same name and group of the same name. And same name on TikTok and Instagram for those that saw the coloring book that are interested in it. If you go to my website, it's either the third or fourth section down, you'll see a picture of it and a button. If you press that button, it'll take you directly to the Amazon page.

1:00:30 Awesome. Jason, I want to thank you for your your openness, your sharing your vulnerability and putting your pain into positive action. Sure. Yeah. You know, at about a year and a half, I mean, I'm, well, I'll forever grieve. It's a lifelong process. But I had a year and a half. I just finally got to a point where I was, instead of always being upset about it, what can I do about it to be a be positive if if anything, in the name of my son, it was the initial of it was I want to my son only lived 15 years. He's got to have more of a legacy than just 15 years.

1:01:10 And that was kind of the ball that started rolling after I did that first letter. Well, thanks again. Thanks for your sharing and I know you are helping lots of other men and families everybody. Sure. Thank you so much. You know, at the end of the day, despite whatever following I have, if I can help at least one, then it was worthwhile. Amen. Thanks for joining us, everyone. Please visit realmenfield.org. See the blog post for this episode, which you'll have all the various links and resources that Jason and I discussed. Wherever you're discovering Real Men feel, please subscribe, follow, do all the things you can to spread the word, to share this content, to show that you appreciate it is helping you. If you aren't sure where you want to go in life, it is almost impossible to get there.

1:01:58 I invite you to book a free Clarity call with me and we'll explore what you want, what's in your way, and what you can do about it. Please visit theandygrant.com/off and until next time, be good to yourself.