Grief Share: Jason Tuttle on Parenting, Therapy, Healing, and Letters to Zachary

Dive into Jason Tuttle's powerful story about parenting two medically fragile children and the lessons learned along the way. In this episode, you'll hear firsthand experiences, practical cooking tips, and an honest look at grief and resilience.

• Jason's journey as a father to two children with severe neurological delays and medical needs
• The simple and adaptable Betsy's black bean chili recipe, including ingredient tips and why it's a family favorite
• Managing mental health as a parent facing ongoing crisis, including grief, anger, and the realities of self-care
• How Jason and his family coped with unexpected loss and the emotional aftermath
• The creation and mission behind "Letters to Zachary"—a grief resource platform for families navigating similar challenges

Don't forget to check the show notes for resources and ways to connect with Jason.

From Jason:

I am a married father of two kids with multiple mental and physical disabilities (some rare). I was a Stay-at-Home Dad for 12 years until my son suddenly and unexpectedly passed away from issues related to his needs on 01/28/22. Since the day my son passed, I created a website, FB blog, and community (Letters To Zachary) on grief that details my raw, unfiltered and open grief journey from a male's/father's perspective.

Connect: 

www.LettersToZachary.com

Facebook: 

https://www.facebook.com/profile.php?id=61552174684952

Instagram: 

https://www.instagram.com/letters2zachary/

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Betsy's Black Bean Chili

1 pound ground round

2 (15 ounce) cans no-salt-added black beans

2 (8 ounce) cans no-salt-added tomato sauce

1 (8 ounce) jar salsa, or to taste

1 tablespoon chili seasoning mix

Step 1

Heat a skillet over medium-high heat. Cook and stir beef in the hot skillet until browned and crumbly, 5 to 7 minutes; drain and discard grease.

Step 2

Drain one can of black beans pour into a large pot over medium heat; add second can black beans, tomato sauce, salsa, and chili seasoning mix. Stir cooked ground round into the beans mixture, bring to a simmer, and cook until the flavors blend, 20 to 25 minutes.

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Host: Reesa Morala, MA, Licensed Marriage and Family Therapist. Reesa is a parenting specialist with a niche in supporting couples. Find Reesa hosting couples and parenting workshops nationwide!

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For the video version of this episode find us at: https://www.embracerenewaltherapy.com/

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https://www.embracerenewaltherapy.com/real-family-eats-guest

If you are experiencing a mental health crisis or need personalized support, please seek help from a licensed mental health professional. If you are in immediate danger or experiencing a crisis, contact emergency services or a crisis hotline in your area.

Suicide and Crisis Line: Text or Call 988

Go to your local hospital or call 911

Transcript

0:00

I never in my wildest imagination thought that we would have to do all the medical stuff and all the special needs stuff. Nor did I ever thought that I would, you know, outlive my son. Hey, everyone. Thanks for joining me. My name is Reesa and I'm your host. We are talking to real families about real stories. Here on the real family eats where we've got food for thought and thoughtful food. So let's eat. Welcome back everyone. Thank you so much for tuning in. I'm so glad that you are here. I am so very honored, to be having our chat with our guest today. I have Jason, who is been kind enough to join us. City. Hi, Jason, thank you so much for being a guest here. Hello, and thank you for having me on. Yes, absolutely. Okay, Jason, for anybody who is listening, who doesn't know who you are, can you please introduce yourself for us? Yes. My name is Jason Tuttle. I'm a married father. 21 years this year. Two medically fragile children. Within about the first five years of my marriage. I had two kids that were both born with severe neurological delays. Epilepsy, nonverbal, basic, wheelchair bound. And then my son was born with a rare condition on top of everything else. So, we started our, marriage very quickly, being introduced into the special needs live. We got, unfortunately, just 15 years of my son. As of about three years ago, he suddenly and unexpectedly passed away. And after a period of grieving, I decided in a way, to create a legacy for my son to create my online platform called Letters to Zachary. Wow. And I know you're going to tell us all about, letters to Zachary a little bit later on. And that's just a sneak preview. So thank you so much. For being willing to come in and get so vulnerable and honest with us because I think that this is, a topic that our society would probably much rather look over. And when you're going through it as a parent, because it is things that people experience, it can feel so gosh darn isolating. So thank you. Before we jump into this story. Tell me what recipe are you sharing with our parents today and why did you choose this one? Well, I mean, because of the aforementioned special needs life and having that and I have a lot of complicated things in my life that I had to know typically, when I cook. I'm a pretty simplistic cook. Just because it is, at the end of the day, all I want to do is simple. And I looked online. I'm a fan of chili and years ago I was a fan of very spicy hot chili. But due to some health conditions, I've had to scale back on the spiciness of a lot of things. And I came across batches. Black bean chili. Honestly, I don't remember. All recipes.com is where I found it. Wonderful. And, I chose it because, one, it only had about 4 or 5 ingredients. It wasn't too expensive, and I could kind of cartridge spiciness based on what I or my kids wanted. My son, was definitely like me in the sense that he loves spicy food, and that's another reason why I chose it. Yeah, I love that. And I love that you mentioned kind of that simplistic. I feel like so many parents that I've heard of, I know myself that sometimes you don't have the capacity to do, you know, a five course meal. And so you do need something that's going to be hearty and just simple that we can throw together. Which is why I love this. We're a big chili fan household as well. We haven't quite tried this one. I feel like everybody has their own take on, series, and so I'm excited to try this one today. So, with that in mind, can you tell us give us the overview of the steps? And then I'll get cooking while we chat. Okie dokie. So typically when I cook it, I don't blow it up because I love chili. And I'll eat it for days on end. So, okay, all the things that I'm giving people, I typically do twice as much just because I like to make more to have for later. And I mean, I'll eat it cold, hot, you name it. But the ingredients are basically, pound of ground round. I've used that. I've used regular hamburger. I've used several different. And they're all pretty good with it. Okay. Two for 15 ounce cans of black beans. It says no salt, but I've done either one. They're both good. Two cans, eight ounce cans of, no salt, tomato sauce, a jar of salsa. I typically do mild in there because, if I adjust the spiciness of it, I do it more in the powder side of it versus the salsa side of it. And then a tablespoon of chili seasoning. And basically, the longest part for me is just browning the hamburger meat that I'm using. And then once I get that done, it's literally you put it in a big stockpot and you dump literally everything in and you let it simmer for about 30 minutes. About the only thing, that you have to do outside of dumping it in is one of the cans of black beans at once. The liquid in there, and one of it once it drained out of just so it's not so soupy in the end. Okay, that makes sense. Well, I can do that. And thankfully, I've got my I've got my brown meat already kind of quick. So we're just like you said, throw it in and let it simmer. So I'm excited to do that today. So while I do that and while I get going, I would love to kind of start at the beginning. I heard you mentioned, and giving this a little bit of a background for you that your introduction in your, in your spouse's introduction into parenthood was kind of really quick in the sense of jumping to from just difficulty of becoming a parent and that like transition to kind of expert level in the sense that you're now dealing with children with fragile medical needs. It sounds like. And so I would love to start if you could share with me and anyone who's listening what that was like, even just at the beginning, and kind of getting those diagnoses as new parents, what that was like for you folks. In my blunt version, as I always am, it was like getting hit by a mack truck while you're standing on the interstate is what it was, at least in the beginning, specifically for the rare condition. I won't get into a long, drawn out version, but the the basic story leading up to all that was. My wife and I got married. We were, mid to late 20s when we got married. We wanted to have, several kids at that point before we found out about my son's, all of his issues, and we had no reason to believe that there were going to be any issues. We were perfectly fine up until the week 20 appointment, which is that appointment where you find out the sex of the child. And we got in there. And just to tell you the kind of, regionally, culturally different views on things. My wife, being from the northeast and a cradle Catholic, did not will for any reason wanted to know the sex of the child. It was the last great surprise. She didn't want to know. I'm not born and raised in the South, but I've lived in the South most of my life. I wanted to know the sex of the child. And plus I was doing the nursery and all that. And so I kind of want to cater to whatever we were having at that point. And we, my family even actually was big in the ancestry in that, my father went back ten generations in our family, and we asked about five generations of my wife's family, and there were no medical issues, no, no medical issue that was in, say, self-induced, like an alcoholism or something like that in the families. Yeah. So we get into the week 20 appointment and we're going back and forth and, ultrasound tech goes, at the point of finding out the sex of the child, you want to know. And my wife and I playfully go back and forth and before we can finish, she goes, well, I've found an issue and I need to know. So at that point, we got to watch the sex of our child. This is you having a boy? Great. And I looked at her and said, can you tell me what the issue is? And she looks at me and she said, well, that's more of a doctor relayed message. And I said, okay, I understand. And I said, well, can you answer this? Why did you need to know the sex of the child? And she said, well, if that's what I think I'm seeing. She said, it's rare. And boys but even rare earth and girls and that's all we know. Wow. The next step was, they referred us to a perinatal allergies, which is kind of a whole, high risk ObGyn. And we saw him from week 20 to week 38, and we 38 was the week that my wife had a C-section. You know, we went through that process. He was wrapped up. We literally thumb saw him 30 seconds and then wished him away to the neck. You in that hospital? Well, my wife had to go to recovery. And then I went up there, and it wasn't until the moment I walked in that Nikki where he goes, by the way, your son was born with a rare condition called Eagle Barrett's syndrome. And at the time he was born, it was 1 in 40,000 births. Wow. Oh my goodness. Okay, so for anybody who doesn't know what that is, can you maybe just give us, a little bit of a summary of what is that what are some of the symptoms? So it's a rare condition because they know characteristics about it, but they don't know the official start point to it. They know it's a GI issue. They know it's, there's kidney issues, which meaning my son was only born with one kidney. The one kidney he did have did sustain some damage in utero. And so what that meant was when he was born, the more he got to an adult, did he have enough good kidney to sustain normal function? Yeah. There's kidney issues there. He was born with an abnormally large bladder that needed to be given a catheter every four hours. At least the first five years of his life. That's a part of eagle, eagle bear syndrome. And so basically, what it meant was where you and I get that sensation that we've got to go. He didn't necessarily get that. And what that also meant was, if I didn't care for them, he was susceptible to urinary tract infections. And for those that don't know, the reason why you get those infections is because there's sediment in that fluid, and it's that sediment. The irritates and causing causes. The infection. And so that's why you have to, void or drain your bladder to get it out so it doesn't happen. It's kidney issues, an abnormally large bladder that has to be, drained. The main reason why it's called, eagle bearer syndrome, and it's also more affectionately known as prune belly, is because my son was not was born without any core dominant muscle. He had none. So, like, I could lay him on the floor. And the only thing between his organs and the outside world was the skin in the fashion that hold the skin together. So I could literally lay him on the floor. And from the outside I could touch his small intestine. His large intestine is his bladder, his stomach is. And he literally was like one of those plastic like biology dummies. You see in high school that since I could literally touch all that and that section from the outside. And so that is all eagle bear syndrome. But one of the reasons why he was medically fragile is because the secondary issue of that was because he didn't have that core muscle there, whereas you and I can when we get a pneumonia or flu, we can cough the crud out. And the reason why is because we have that muscle there. We can create pressure on that muscle, muscle like a foundation. And it's it pushes all of that muscle to force it out. Or because he didn't have that muscle, he didn't have that much force. And so if I didn't catch it early enough, ultimately we were in the hospital. Yeah. Wow. I imagine especially is this being your your first child, your introduction into parenthood. But that's gotta be scary. Yes. It's it's a very steep, almost straight up learning curve. Yes. But especially the first I typically tell people usually about two years. Six. And the reason why I say that is because what they don't tell you about a lot of these medical issues, they tell you about the primary system, but they don't tell you about the secondary issues that happened because of the medical issue. Like typically in Eagle Bird syndrome, kids who don't necessarily have a lot of respiratory issues. But my son did, and for the first five years of his life, we were literally in and out of the hospital every six months in the ICU. Every time we went, wow. Yeah. And so I'm, I'm curious if you'd be willing to share. Did that impact just even your own well-being, your own, kind of mental wellness and stability? I mean, can you talk just a little bit about what was going on for you in that moment? Yes. It affected it vastly. And so what I know now, because of of events that have happened three years ago, what I realize now from back then was I was grieving at that point, not realizing I was meaning I was grieving the life I thought we were going to have versus the life that we were given. And as a subsequent issue from that, I held on to a lot of anger for a very long time now. It was more of an internal anger. It wasn't necessarily directed at anybody, but it had come, was, you know, either snappy combat comments or, you know, kind of quick, weird stuff or snarky stuff. And, I mean, it would come out, but it wasn't like I was looking at my wife and yelling at her by any stretch of the imagination. It was just something I was holding on to. That was coming out in its some way. The other way that it affected me was, since the day my son was born. If I don't have medicinal help, I can't sleep because there were several occasions throughout the years that I literally woke up, heard him in his monitor, came into his room, and I'm in his room. I had to get him up, get him dressed, and raced to the hospital, in the middle of the night. And so from that time forward. So even to this day, I take a medication to help me sleep. And so I mean already, you know, you're maybe traditional newborn kind of young child. Those are sleepless nights already. Just fine by nature. Now we're adding like you said that live. It's almost like a necessity to it sounds like to be on high alert. So I can absolutely appreciate, like you said, that it's really impacted, even just the sleep portion. If we just want to talk about, you sure certainly know. As a caveat to it, both of my kids were excellent sleepers. They slept through the night from day one. Wow. I have worked in education, so you can imagine I worked on the elementary level work with mostly women, and I used to get so much flack for that. That's so unfair that you're. And you said. I said it may be, but I said for everything else I've been given in life, God had to give me something or I would have lost my mind a long time ago. And sleep is the one thing he gave me. Yeah. And and so I, I was always and, and to this day, even with just his sister and just alive, I'm still always in go mode. I don't shut down. Well, that's got to be exhausting. It is, especially on those stretches where I don't sleep. Well, yeah. Currently, I'm kind of a couple of days into another stretch where I been sleeping. Well, I know last year I, I did a stretch of three weeks where I just, I just I was up and down all night, or I was sleeping four hours a night or, you know, I was just. I wasn't getting rest. Yeah. So how do you move through that to, you know, be able to have some sort of capacity to still because when we as parents, when we don't sleep, it doesn't mean that our job as parents just we get to take, you know, time out. We don't have time off in that way. So how do you how do you manage that? How do you work through something like that and, and still be able to kind of do the day to day get up and take care of them? I mean, it's all sound really simplistic, but I, I essentially have just forced myself to muscle through it. Whereas most people might have, you know, a second or third when I would get to my seventh and eighth wins because, I mean, I just, I had to I had no other choice other than just to do it. I mean, it was just it was just my way of life. Yeah. Were you able to find, you know, especially in the, in the earlier years, any forms of support or resources that that helped alleviate even, even in the slightest, some of the pain and the stressors and the grief that you were meant you were having to work through, yes. And, knowing my personality type, I'm still going to stress that, I mean, I could have everything sitting at my door and I'm still going to stress about it. It's just it's just. And I have accepted. It's the nature of me. I just I was sort of dealing with my kids issue. I have dealt with depression for 20 plus years, anxiety, and I was just recently diagnosed ADHD. And okay, when my, counselor diagnosed it to me, I literally looked and I go, I said to her, well, that explains a lot. Over the last 40, 40 some years. Wow. And so I on top of I had to kind of push my issues aside when I had a moment to, to be able to deal with my kids and just everything going on with them. Yeah. So, yeah, I just, I, I, I mean, I just did what I had to do. Did you find that the stressors that you're dealing with as a family, was that exacerbating, some of the depression and anxiety that you already kind of had been working through? It sounds like at this period of time, if I'm hearing you correctly, no, I don't remember that it did, honestly. But I know that my I didn't realize in the moment and honestly, I fully admit every, the actions that I did, my anger did come out. It wasn't towards the kids or my wife, but it was affecting our marriage. And there were moments where you know, both my wife and I were very blunt, just as we grew up. And there were moments where she, in response to me, kind of laid into me. And I respectfully took it because that's I mean, honestly, that was the right thing to do. Looking back on how I acted, because I didn't know how to handle the immense amount of stress, and then it got to a point to where even I went, enough of this garbage. I need to see someone because I've got to get past this, and I, I saw a counselor one once a week, every week for a year, and I finally got through a lot of the garbage I was dealing with, the, the kind of help things along. So, I mean, yeah, it did come out and then the other thing was it never got out of hand by any stretch of the imagination, but I found myself in the evenings and my kids were asleep, or I was starting to drink to take the edge off, because there was just so much stress. And there was so much, at times, Life-Saving things I had to do in a moment's notice that I had to have something that just don't things for, if anything, a short period. Yeah. And so but again, like I said, that never got out of hand. And, it wasn't a long period of time, but I finally got to a point where, just like I, I've just got to stop doing this. And I imagine that in itself of, of reaching out and kind of coming to that awareness of something's gotta change and, and being able to, like you said, go to a counselor and say, hey, there's there's a lot of stressors here, that, that are impacting and, and I'd like some, some ways to be able to help alleviate that because I think, again, and this is a soapbox for another day that we don't get taught some of these emotion regulation, stress management, how to be able to like you said, when we're feeling overwhelmed, we able to actually work through that without feeling like I just I don't know anything else but to numb it. So so here, I've gotta find some way to numb it because it's just too much. Yeah, exactly. And I mean, I, I went through a couple of vices, if you will, never going to drugs or anything like that. But that just never was my thing. But, you know, I drank for a little while. I smoked cigars for a while. I mean, I just, I went from kind of one thing to the next just to be able to get through those moments. Yeah. And I appreciate you mentioning even things like cigars for you. It sounds like they were coming, you know as, as something to kind of take the edge off or to help relieve because I think sometimes we forget about those things and we go, you know, smoking a cigaret or, or smoking a cigar or even having a drink of, of alcohol and. Oh, it's it's not that's not what it's for. But absolutely, when we're finding kind of ourselves reaching because we are just looking to take the edge off, that it could mean that it's potentially something for us to look into if we just, like you said, kind of those stressors that we just don't know any other outlet to be able to kind of deal with that. Yeah. Would you be willing you mentioned something and I wanted to take a moment if we could, to circle back to okay. You mentioned grieving the wife. I thought I would have read the, the the parenting piece of it. And I've heard that before. And I would love for you to say a little bit more about that grieving, because I think sometimes just as a, as a whole, we miss that part and we maybe don't give it space or time. We, you know, all of us, when we decide if we decide that we want to have a family, you've got this mental picture of what you think your family life is going to be like. I mean, you could go back to a classic example of the nuclear family of, a husband, a wife, three kids, a dog, the fence, that kind of thing. And, you know, I didn't necessarily have that picture, but I never in my wildest imagination thought that we would have to do all the medical stuff and all the special needs. Nor did I ever thought that I would, you know, outlive my son. And, you know, some of the things I threw out there, like, for example, I can run my mouth. I mean, I'm a I'm a talker. I'm like my father. I can talk to a wall if I really needed to. I just, that's just how I am. And then I had a son who was born that never talked because he was nonverbal. I had a son that all I ever wanted to hear from him was just him saying that once, and he never his entire life said it. My degrees in physical education, I'm very sports minded. And not that I would have pushed him in it, but should he have wanted to go into sports, then we could have had that, had that bonding moment. And he had special needs where he probably would have never played sports. And so that was it for me. That was kind of the the grieving. And then for my wife, it was just all the normal things people get excited about. You know, your child's born and then they roll over and then they start crawling. They start walking. We didn't necessarily have those or, you know, not that anybody wants the terrible twos, but we didn't necessarily have that or some of the again, some of the things that everybody else had, we weren't like anybody else around us. And so all of those things were really tough pill to swallow for us. Yeah, I imagine so. And like you said, some of these things that maybe others would take for granted, and then not having that and, and the grief that comes with, like you said, just rolling over. Great. And you see that all the time. I can't tell you how many countless social media posts I've seen of people doing those things. And oh, look at this milestone. And then to not be able to experience that in your own parenting journey, that that it does come with a grief that maybe doesn't get talked about. Yeah. So okay. So fast forward and then your second child was born and you said if I, if I heard you correctly, your second child also having fragile medical needs, I hear you correctly. She did okay. My son had the rare condition, but both of my kids had identical neurological delays, which were severe. Both had epilepsy. In fact, of the six different kinds of seizures, I've seen four of them in my house. Wow. Both of them were nonverbal. Both of them could walk with assistance, but they couldn't walk on their own. So they were basically a wheelchair bound. Now, granted, if you put them both on the floor, they could ami crawl like nobody's business but like to stand up and walk. No, my son never walked on his own. My daughter has kind of stood on her own for a brief moment, but walked now. And so that's one thing. Like, we've done genetics for ten years now, and they still can't figure out why when there's been nobody with medical needs in our family like this. We had two born two years apart, almost to the day, almost identical to each other. They still can't figure it out. Yeah. And I imagine that surprise, like you said, where there's not there's not a preparation of this ABC runs in our family then that just kind of piles on to this. Like how do you prepare for something like that? I mean, you don't and it's it's kind of along the ideology of people that say, you know, one of them wants to stay at home, and the only way you can do it, you can't prepare for it. You just have to do it because you if you prepare for it, you'll never be ready for it. Yeah. And getting introduced in the special needs world is similar. I mean, most of us will never see it coming, but when that happens, you just you gotta play the cards that you're dealt and do the best you can with them. Yeah. Was that when you got the news about your second child? Can you talk a little bit about that experience and kind of you're already dealing with with your first child and now the second child and getting, you know, this information as well. What's going on for you? What's that like? It hit hard. I'll never forget it. We had, in Georgia. Here we have, babies program called, Georgia Babies. Can't wait. And it's kind of an early intervention service for kids, to help them, along with their normal steps and goals up to a year or five years. It's something like that. And one day we had an occupational therapist that was coming in for my son, and she came in, she had an intern with her, and she said, do you mind if my intern does what they call the Peabody Skills Assessment test on your daughter? And I weren't sure if I had to pay for that out of pocket. I don't know what that taskmaster said, so practice away. Yeah, and she did it, and I'll never forget it. She looks at me and she gets, in my professional opinion, that your daughter's delayed. And now this is the first it has ever been mentioned from anybody. And I admit my response wasn't the best response. And I sincerely apologize to them. But I literally looked at her. I went pack up your ass and get out of my house. Wow, that cold hearted. And yeah, because I my brain could not handle it. When I heard that my brain just shut down because I was just like, the wheels are starting to turn for her on top of my son. I don't know if I'm gonna be able to handle this. And, you know, we went to our pediatrician, and she has a special needs daughter. And it was finally through our pediatrician that said, you know, I tend to agree with you. You may you may want to have her start seeing her, neurologist. Wow, wow. And like you said, I can only imagine I would probably be in a similar state. And, you know, even even to this day. And I'm. I've been a therapist for many, many years. Think that your brain, like you said, would just shut down like I. I don't have anything else for you right now because the house is on fire and there's no water to put it out. Yep. Yeah. Wow. And so then from that, like you mentioned, I know, you know, kind of forwarding a hand, then you had the the passing of your son. And so I would love to kind of if you're, if you're okay with it, go in and then that experience on top of everything else. Okay. So up until about year six it was a steep learning curve. And after about year six, we really started leveling off. At that point, we had a few hospital stays. We did have a major surgery. To kind of give my son some reconstruction in his midsection. And that really helped on the hospital stays. Once he had that surgery, it almost went down to nine. And the only other hospital he had after that was about five months before he actually passed. He had a spinal fusion surgery because he had bad scoliosis. Okay. So all the things that I was a stay at home parent during this whole time and with all of this hospital stays, I got, like I said, I'm in his room and I'm one of the other walls. I used to have a shelving unit, and I had six respiratory related machinery. The the moment I heard a cough that would come out of them, I would immediately go into my medical protocol and I would go from a machine A to machine B to Didi to have all the way down the line to kind of give the crud loose, get it suction up, get it into, to get it out of his stern, out of his body is what I had to do. And then I at the end, I had to use a nebulizer, which every parent knows what a nebulizer is. For breathing treatments to help keep it at bay. And if that didn't work, I would end up in the hospital. So all of my medical knowledge was in kind of the respiratory, neurological end of things. Not so much outside of that. And, I could get really detailed in him, but kind of the less detailed version of it is three days before he came home. And that evening he got, you know, he threw up a little bit while we were brushing his teeth. We kind of thought that maybe we hit his, like, gag reflex and something just came up. Yeah. And didn't think much about it. You know, we put him to bed, and, you know, he's always been a great sleeper. Well, that night. So that he. If there was Wednesday night, he kind of threw up. We put him to bed that night, and he was literally up and down all night. And which was unusual form. So that next day, which was Thursday, I you know, Texas teacher said, hey, I'm keeping him home. He's sick. I don't know what he's got. I don't want, you know, I don't want to spread into his special education room. I'm gonna keep him home. Great. Send my daughter off to school. And then that day, like, I sent him in his favorite chair. And I kept telling him all day, buddy, you can take a nap. You got to be exhausted. You've been up for, at that point, 20 hours or something like that. Something ridiculous. Well, and he wouldn't go to sleep. He wouldn't drink or eat a whole lot. But that didn't strike me as anything, because it was the first day. And I looked at my wife and I said, what if he's refusing tomorrow? I said, that's going to catch my attention. I said, I'm okay with one day. That's the kid who wants to eat or drink. When you're feeling like garbage. Yeah. And I said, if he's not doing a master, that's going to catch my attention. So he refused to take a nap. He refused to do anything like that. And then that evening I put him to bed and he immediately gets quiet. My I just looked at my wife and said, he's got to be exhausted at this point. He's been out for 40 hours. He's just going to be he he's probably just passed out because he's just so exhausted. The next morning we got, it was just a gut call. I told my wife, I said, I'm gonna keep him home again. It's Friday morning. I said, worse comes the worst. I've got the weekend. Well, we'll get more time to recover. We'll go back on Monday. Gray told his teacher. Sent my daughter off to school. Typically, when I go in to get him up on a weekend, he would bounce and clap and be excited to see everybody. And I walked into his room and his eyes were open and I wouldn't say he was lethargic, but he just kind of. He looked at me, but the look was kind of he looked through me versus looking at me. And I came over to the side of his bed and I noticed I on the right side of his mouth. He had a dark green streak of fluid that was coming out of his mouth. And I look at my wife and I go, the only thing that's dark green in the body is bile. And why is it coming out of his mouth? Yeah. So so I get him up and he's floppy and like. Like he can't hold himself up. And that doesn't strike me because I had a couple of times before we went for a respiratory stay. He was that way. And I thought, well, man, I said, he looks like he's getting sicker. I need to just make some decisions. So I take him out into the living room and I go through my medical protocol and nothing's assured. Anything like that. And because of his personality, typically he's either spongy or really pliable in that section. And I go to feel it, and he is like cinder block wall rock hard. Wow. Right where he's like intestines would be. And I go, this is not right. I said, something's wrong. And in that moment in my brain, time starts slowing down. I go, what am I going to do? What's my next steps? How am I going to do that? And I look at my wife and I go, I'm going to get him dressed. I'm taking him to children's Hospital. Something's not right. It was honestly a gut call. Jim dress came in the van and I do like 90 miles an hour up to the local children's hospital because I don't know what's going on. I don't know how long is I get in there? I park in the parking deck, and I go to get. I get this chair, and I go to lift him out of the van. And he's very floppy at this point, and this catches my attention. So I get him in his chair. I get up to the like the front desk of the E.R., and I skip the line to go to the nurse, and the security guard comes over to me as if to say, you need to get in line. And I look at him without skipping a beat. I went, I don't think he's breathing. I need help immediately. And the nurse hears me. She comes over to me. She looks at him. Now understand? I've been in this hospital a hundred times and she goes, follow me and we go at a full run as fast as we can. Go back into the E.R. to a trauma room. We get in there and I them because I've been in the hospital so much, I unbuckling from his chair. I put him on the gurney and I instinctively back away and hope they don't let me stay in there because he's non-verbal. He can't talk. And so luckily for me, there's a trauma room next to this one, and the doors are open and I back off in there to where I can see things, but they have room to do their thing. Yeah, well, a group of like 30 people come in there and. And they just like ants on an ant hill. They cut off his clothes. They immediately intubate in, which puts the tube down to get air in his lungs. And the first thing that they do that catches my attention, this guy walks over to his knee and like a drill like drills important to him just immediately. Wow. And and it's literally going into his knee like the bone. Yeah. And my son doesn't even flinch. And so on. Later asks him, what did you do right there? And he said, typically when people come in like this, when we don't know what's going on, he said, is it's a way to get antibiotics into him very quickly. And I said, okay, well, they gave him no pain meds and a normal person, if you drilled into a bone, they would have come off the table. I mean, it would have been so excruciating, like it would have been so excruciatingly painful, like you would have probably passed out because you're you couldn't have mentally taken it. So they do that and we're there about two minutes and they immediately start chest compressions on him. And I'm seeing this and I'm recognizing it, but it's just not registering in my brain. The severity of what's going on here comes over to me. And she goes down to the minute, how long has he been this way? And I said, plus or minus like two minutes. He's been this way for this long, goes off, barks orders. He comes back to me and she goes, explain to me this scenario as to why you come in, I tell her, and then she goes back and barks orders. They've been doing chest compressions at this point for about three minutes ish, and I see him get the I see him get the paddles out. They put him on him and I hear me all clear. And just like a medical drama, it shocks him. And he raises off the table. And I'm because of his respiratory issues, I'm very familiar with that much. That shows the pulse, the heart rate, the oxygen, all that on it. And then the shock. I'm in a good mood and goes right back to what it's doing. And in that moment I get a little he's not coming back and it's still the I'm like, I don't get emotional at this point. I just in my brain, I go, he's not coming back. Well, they were for 45 continuous minutes trying to save his life. And they finally they get to that point, comes over to me and she said I could shock them again. But unfortunately I think the results are going to be the same. And I said, do what's medically necessary or professional. I said, this is out of my wheelhouse. They do it. Nothing changes. And she pronounces them, I. As you can imagine, I go off, I have a moment, and it's literally like, 20s, I have a moment and I immediately then call my wife. My wife at this moment who's working from home, is thinking, I'm going up to the hospital, he's getting married. We're going to be there 7 to 10 days as we normally are. I'm going to come home. I have to tell my wife and my son's dead on a table, and I will never forget the sound she made when I told her that she had her moment, she regained her composure. I said, message your boss. Leave work, call your parents. Have them drive up here. You're not in a state to drive. You need to be up here. And I left it at that. She said okay, and that's what she did. I then called my mother. I'll never forget her response and what she said. Now, later on down the road, she goes. How soon after he passed did you call me? I said, about ten minutes. And she goes, you were eerily calm, being only ten minutes after your son had passed away. She said you were almost robotic. And I said, well, in that moment I had to be because I had to tell Jennifer, tell you, get information. And I said, if I had been a quote unquote blubbering idiot at that point, I said, I wouldn't have been able to talk to you all. And I did that. And then, you know, the care team came in and all that kind of stuff. And, you know, she asked if she could help. And I pointed at my son and I said, this is going to sound cold and callous, and I really don't mean it to be. I said, but I need information right now. That's what's going to help me in this moment. And she goes, okay, what do you need to do? And I literally rapid fired back to back like 20 questions. I mean, as fast as I could get them out of my mouth and she takes a step back and then she goes, well, let me answer the first one she got. And, you know, she answers all of them. But it's kind of in this section. We were there and people always ask me about that day. What was the hardest thing outside of them actually passing? I said, there are two things I'll never forget, I said as I was sitting there waiting on his mother to come up. I said it surprised me how cold he got, how fast he got that way. Like he had just been pronounced. It may have been 15 minutes and I wanted to go, like, rub his hair out of his, his face. And he was ice cold. And it that shocked me. And then the other thing was when we finally decided to leave, and, you know, we're going to go to a funeral home, that kind of thing. I had to take all of his cut off clothes, put them on his empty wheelchair, and we lived through that hospital, put it in our van, and we're 60 miles from this hospital. We had to drive 60 miles home, in literal dead silence. Yeah, like we were just in shock to get home. And I told people, I said, those are the two hardest things I've ever had to do. Wow. And, gosh, I am so sorry that it just to kind of hear you tell that and to be in the room and like, you should kind of see all of this. And I imagine just the helplessness in that moment, as they're carrying, I didn't feel helpless in that moment because the thought my brain was, the people that are working, these are the best people possible who, if they were to save him. When I realized he wasn't coming back to be working on them because I didn't have this kind of knowledge. And if there would have been, I mean, if I hadn't called an ambulance. Sure. EMT is have a lot of medical knowledge, but do they have it to the point of like a hospital? E.R. that I don't know. And even after the fact, when we walked into the Haiti, our doc came out of like a little cubby that was right where she was. And I stopped and I pointblank looked and said, look, I am by no means upset at any of y'all. I said, y'all did the best y'all could. I said, yes, this sucks. I'm had my. Moments later I said, just because I'm in shock at this point, to be honest with you. I said, but thank you for all the childhood and medical dramas. Do not do y'all justice. And I said, I appreciate everything you all did. And I mean, I walked off I, you know, I get they get affected by this to their human just as much. I just wanted her to know, look, y'all did everything y'all can. I never thought y'all would work for 45 continuous men. And I knew they weren't going to do 5 or 10, but the war for almost an hour continuously to try to save him. That just blew my mind. Wow. How do you. Because I heard you mentioned in that point. So, you know, you're you're feeling the shock, which I think makes so much sense. And, you know, you mentioned there I'll have my moment later. How do you move through that and move forward from that? I will say my the first moment I had was like I said, I'm in his room. We got into the house. You can't see it here, but kind of, where the curtain is on my screen. If you go to the the other side of that, there's a corner in this room. I will just wheelchair. And with all of this cut off clothing, clothes on it, and it has not left that spot in three years. And when I came in here, I did that, and I kind of stood by his bed and just kind of stared at it, and it was just like, out of the blue, the dam broke and it hit me like a mack truck. And I had a moment for there for a while, we knew that we had to go over to my folks house because, like, my whole family was over there and, you know, my brothers and I were cordial with each other. And it's not like we don't like each other. It's just we typically see each other on family functions that kind of like, oh, are we buddy buddy where we hang out on the weekends? No, but, you know, family functions were together all that. I walk into my parents house and I've never been this way around my eldest brother, but I saw him and I walked in. My parents room and, like, my knees buckled and, like, uncontrollably. I don't know, I've never been that way around. I don't know what it was about that moment where I was that way, and he grabbed me and gave me a hug. And as I was having a moment and, you know, I went into the living room and everybody wanted to know what was going on. So I was trying to tell them, but, you know, I get 4 or 5 words. And then that, like trembling feeling started, and then I get 4 or 5 words and I mean, that was the longest conversation I think I've ever had. And so that was kind of how I dealt with it. And, you know, there was just a lot of anger, a lot of emotion. There was and there was a lot of times I wanted to go out and go out in the garage and punch a hole through the drywall kind of scenarios, those kind of things. And then I'm one of those people in in situations that are on or off the wall or similar to this, I have a weird sense of humor. And so a lot of my weird sense of humor was coming out when I wasn't having emotional moments, that kind of thing. So that's kind of how I dealt with it. Yeah. How did you get from that to to the mission of letter? So, Zachary, can you tell us a little bit about where that was born from? Sure. So I'm a proponent of, of counseling and therapy, always have been, right after my son, literally two weeks before my son had passed, I had literally finished up what I felt like was a season of therapy. I called her, I told her, and I said, you know, if I need you again, I'll get on your waiting list, that kind of thing. And, I'll get back to you. And so my son had passed and I called her, and I said, hey, I need an emergency session. I really don't want to talk about it over the phone. If you can squeeze me in anywhere, I promise you, you will understand when we meet. And luckily, she was able to get me in. And at that point, I was going once a week for a for a very long while, and probably about the A about two months into it. I want to say we were talking and she goes, have you ever thought about journaling and the irony of my next statement? Based on the response I've gotten since then, is I said, you know, I don't know if journaling is my thing. I don't know how great of a writer I am is. My exact words. And she goes, well, she said, you don't have to do it right now. She said, it's more of a mindfulness activity to get it off of off of you. She said, you don't have to share with anybody if you want to. You can, she said, you know, you can physically write it down, shredded or burning or whatever you want to do with it. It's more to get it off of you than anything. And I said, okay, well, I put that on the mental backburner for probably nine months after that point, I started, I resisted, I didn't want to do it. And then one day I got on Facebook and I was watching, like a Facebook reel or a video or something, and I don't even remember what it was about. And something in one of those videos struck a chord with me. They're related to my son. And I was sitting on the couch and I just lost it, like bawling, crying, you know, just ugly crying, you name it. And it was in that moment that I opened up a word document and in proper Oxford English style, I because that's how my ADHD brain works. I read it, you know, the day, dear Zachary and I just verbally vomited on a page, and, like, I was real into the sense of if I felt like I needed to write an F-bomb, because that's what I was feeling. That's what I wrote. And I did that several times a day for weeks. And, essentially what had happened was I got to know this female admin of one of the great groups I was in, and on one day I said, hey, do you mind if I post one of my journal entries? And before I could literally finish it, she goes, yes, we would love for you. Do we rarely, if ever, get man in here willing to open up in this group? And I said, okay, and I'm going to go share. And in my brain I go, no matter how normal this may be, is it still the internet? Am I going to be able to handle negative comments? Should I get them? Because at that point in time, my brain probably wasn't in the best space and I went, oh well, I'll do it anyway. And that evening I got a massively positive response. The best comment I ever got was I had this one woman in the group goes, we've never met. Our paths have never crossed, we've never talked. I've never told anybody anything. Deep down how I feel about the loss of my child. And she shares your letter. I, relate to it. It's word for word, the entire letter. And she goes, this speaks to me. And I said, well, I appreciate that. It resonates units and inspired by my son. And I kept doing these letters for weeks. And when you start to get to a point where people recognize that they think that you're good at something, they start giving you this suggestions, podcasting, writing a book and, and all of a sudden where, you know, I don't know if I'm in the brain space for it. And it was somebody said, well, have you ever thought about doing a Facebook page? And I went, oh, what is that? And they told me, they said, you're not creating more material. You're basically copying pasting at this point until you run through it. And she said, and they said, you can create a following that way and go from there. So that's kind of what I did. And that typically is where I post everything first, because that's where everything started. But like in the in the premise of it, I started reaching out to people in the grief community and started getting pointers of what worked for them or not, because, like, I told them, I said, I think I've got something here and I want to grow it. And so because of those pointers, I really started to grow, for, for what I was doing. And so that's basically how Letters to Zachary came out. I write letters, I write prayers, I do memes, I do short videos, I do, GIFs or just. I can never pronounce that. Right. I do, you know, I do anything grief related. I'm on Facebook. I'm on Instagram, I'm even on TikTok. And I never thought I'd be on Tik Tok. And I've grown to like it just because I, in my ADHD brain. Because I. So I always randomly come up with thoughts especially related to grieve. I can go on the record a two minute video about a song, grief, and get people to respond on it. And so that's why I like TikTok so much, is because it works with just how my brain operates. But, I mean, I, I've even created a professional website. So, I mean, it's and I mean, I've only been doing this now 17 months. Oh, wow. Okay. And, and so I've done that. I'm also published. I have gotten published. It's not a book. It's actually a coloring book. Okay. Well, I think that's a perfect segue way into our shameless plug section. For anybody who is looking for some of these resources wanting to connect with you, please tell us how we can find all of these these things that you're offering. Sure. For those the ones that are interested, that want to get connected with me, you can go to letters to zachary.com, and Zachary is spelled Z. ACH a r y. I know some people spelled e r y and that'll that. Yeah. I've got icons for all my social media at the bottom of the page. I've got, journal entries of the first full year of grief, connected to my page as well as multiple other writings and different forms. If you're interested in the coloring book I just mentioned, it's like the third or fourth section down, you'll see, and the button there will take you directly to the Amazon page for, I've got an About Me section. I've got, a lot of the media I've been on. I've got, grief resources on there. I've got several different things on there to kind of help people out. Just kind of in the, in the grief community. Wonderful. And as always, anybody who's listening, we will make sure those links are in our show notes, so you can pop down there and make sure to grab those links as well to get connected. With Jason, decent. Thank you so much for being willing to, not only share this recipe that I'm looking forward to trying, but also for being willing to share your story in such a raw and unfiltered way that I think will have so much value to our listeners who have maybe walking in a similar journey or have experienced similar things, or even those who are listening, that maybe you're wanting to support someone who's going through that, give them a little bit of insight on maybe what it's like. And so thank you. Thank you so much. It's such an honor to be able to to have you on today. We thank you so much for having me. Yes. And thank you, everyone for listening. And make sure to come back next time. We'll see you then. If you or anyone that you know is struggling with any of the topics that we discussed in today's episode, make sure to check out our show notes for support and resource. This you can get help. Thanks again for joining us on today's episode of The Real Family Eats. If you're a parent ready to share your real life parenting story, make sure to reach out to us and our website found in the show notes. And that goes for today's recipe social media's support and resources. All of that can be found in our show notes, so make sure to check them out and make sure to follow, like, share, subscribe, and stay up to date on all things the real family eats. I hope you'll join us next time for more food for thought and thoughtful food. Enjoy your eat!