Healthy Mindset Miracles

Ep.015 - Letters to Zachary: A Father's Journey Through Grief with Jason Tuttle

• Healthy Mindset Miracles • Season 1 • Episode 15

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What happens when the dreams of parenthood take an unexpected turn? Join us as Jason Tuttle, a devoted father and elementary school physical education teacher, courageously shares his family's emotional journey from the joy of expecting their first child to the heart-wrenching discovery of severe medical conditions during a routine 20-week ultrasound. Jason’s heartfelt recount of his and his wife's differing family backgrounds and the moment they learned about their son's rare health issues offers a poignant look into resilience and hope amidst uncertainty.

In this episode, Jason opens up about the relentless challenges of early parenthood, including their harrowing experience in the NICU and the staggering responsibilities that came with their son's diagnosis of Eagle Barrett syndrome. He also delves into the ongoing struggle of balancing healthcare needs and educational opportunities, highlighting the importance of community support. Listen to Jason’s inspiring story that underscores the power of love, hope, and unwavering determination in facing life's toughest hurdles.

Then we delve into the heart-wrenching story of a father's journey through grief after the loss of his son, Zachary. For 15 years, Zachary was a vibrant part of his family, despite his medical fragility. Jason recounts the painful yet tender memories that marked Zachary's last hours.

As we explore the stages of grief, we learn about the therapeutic process that helped Jason cope with the immense loss. The discussion moves into the therapeutic act of writing letters to Zachary, a practice encouraged by his therapist as a way to navigate his emotions. These letters, raw and unfiltered, capture the true essence of grief, revealing the good, the bad, and the profoundly painful. Jason shares how this method not only offered him solace but also resonated deeply with others who have experienced similar losses. 

The unexpected growth of a supportive community around these heartfelt letters. From a modest beginning, the Letters to Zachary Facebook page blossomed into a platform with thousands of followers across the globe. Jason's sharing of his grief has connected people from different walks of life, offering them a space to express their own pain and find comfort. Join us as we discuss the power of vulnerability, the importance of community, and the enduring love of a father for his son. 

Ways to get in touch of Jason Tuttle:
Facebook: https://www.facebook.com/profile.php?id=61552174684952
TikTok: https://www.tiktok.com/@letters2zachary
Twitter/X: https://x.com/Letters2Zachary
Instagram: https://www.instagram.com/letters2zachary/
Website: www.LettersToZachary.com




Thank you for tuning in to this empowering episode of Healthy Mindset Miracles." We hope you found inspiration and insight into the journey of redefining your mindset.

If you have any questions or would like to share your own experiences, please visit our website:
www.healthymindsetmiracles.com

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Stay tuned for more episodes where we continue to explore the path to healing and well-being. Until we meet again, may you discover a healthy mindset in your life. 🌟

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Tanisha Adams :

Welcome to Healthy Mindset Miracles. My name is Tanisha and I am so excited to have Jason Tuttle with us today. He has an incredible story. It's a sad story, but it is the story of overcoming and resilience for sure. Jason, thank you and welcome.

Jason Tuttle:

Thank you so much for having me. I appreciate being on.

Tanisha Adams :

Yes, absolutely. Now you have created an entire organization called Letters to Zachary, which has to do with the fact that you are a father of two special needs children with mental and physical disabilities, and one of them, at the age of 15, unfortunately, is no longer with us, correct?

Jason Tuttle:

That is correct.

Tanisha Adams :

Tell us a little story. At what age did you find out about their disabilities?

Jason Tuttle:

Okay, I have a son and a daughter, and my wife and I got married in 2003. I am basically from the South, my wife is from the North and I say that in the context of my wife is from the New England area. She's a cradle Catholic and anybody that knows of those family. They are very large families. I am basically Southern, was Methodist all my life up until recently, and my side is a pretty small family. So when my wife and I met and we were dating and we decided we were going to get serious, her first response to me was I want to have four kids, and so my response, as any man would be, was let's have one.

Tanisha Adams :

And see how that goes, and let's see how that goes.

Jason Tuttle:

And I wasn't against it because at least at that point in life I was still thinking I was going to have the three kids the white picket fence, the traditional, because my family, the one I grew up in it was my parents and my two other brothers. So it was two parents, three kids, animals, that kind of thing. So about a year after we got married we decided we wanted to start trying, just because at the time that we got married I was 26. My wife was 29. The women out there understand that once you hit your thirties, especially having kids, you start kind of increasing things for the Down syndrome type issues. And so my wife was just like, well, if we're going to have kids, we need to start now. And I said, okay, not a problem. And I mean I was ready. At that point we were just like, well, let's full steam ahead, let's go. So it didn't take us long to get pregnant.

Jason Tuttle:

And then at that point everything was fine. We had no reason to believe there was going to be any issues, any medical issues, anything. In fact, during that time my father got big into like ancestrycom and was doing kind of the genealogy stuff. He had gone back 10 generations in my family and there was nothing. And then my wife had talked to her family and they went back like five generations and there was still nothing. Now, granted, historically speaking, anything before about the 19, probably 50s-ish there was kind of taboo to list that you had a child with, say, a Down syndrome or cerebral palsy. So we can only go back so far to actually find anything. At that point, like I said, nothing was really wrong. And then we got through weeks, just kept going by, and we got to the week 20 appointment, which anybody that's having a child knows. That's the appointment where you find out the sex of the child, because you get out of your first trimester, you're into your second trimester and typically, once you're in your second trimester, everything's kosher until birth, so to speak. So we go to that appointment and all the way there, my wife didn't want to know and I did want to know. My wife's view was well, this is one of life's last great surprises. I'm a planner. I wanted to know just because I was setting up the nursery and I didn't want to paint neutral colors and I wanted to cater to whatever the sex of the child was.

Jason Tuttle:

We get into that point when the ultrasound tech does her job and she gets to that point and she goes do you want to know the sex of the child? Cause I'm almost to that point, and so we playfully go back and forth and you know we're kind of bantering back and forth. She goes I need to know because I've seen an issue and we said we want to know. And she said, well, you're having a boy. And we said, well, what's the issue? And she goes well, that's going to be a doctor kind of thing for you. She said, but I needed to know the sex of the child. I said, well, why did you need to know the sex? She said well, in boys, if it's what I think it is she said it's considered rare. If it's in girls, it's even rarer, and so I needed to know.

Jason Tuttle:

From that point we started seeing a perinatologist, which is basically just a OBGYN that deals with high risk pregnancies. Is what a perinatologist does. And from week 20, a perinatologist does. And from week 20, all the way up until week she gave birth 38. So up until week 38, we kept seeing a perinatologist and they went over every possible doom and gloom scenario.

Jason Tuttle:

At that point we didn't know officially what my son's issue or issues were. We just knew that at that point he was born with one kidney. That one kidney has sustained some damage in utero and was continuing to sustain some damage. He was born with missing areas of white matter on his brain and I think that's it. But they gave us a lot of other scenarios of what it could be. As you can imagine, as a young couple that this is our first child and all of a sudden we're just getting hit with all these major medical issues, the day comes where my wife's going into labor. I'm driving her across the city to the hospital. We get there, in fact she's getting to the point. The city to the hospital we get there, in fact, she's getting to the point. Now my wife is five foot four and about at the time was about 150, 160 pounds pregnant and my son was eventually born at nine pounds, 10 ounces, was like 30 something inches long and where did she put him in her small little body?

Jason Tuttle:

Yeah, she was all baby.

Tanisha Adams :

Wow.

Jason Tuttle:

And so that evening, the day that my son was born, he was actually not supposed to come for another week. He was just like forget this, I'm coming tonight. And even that night he was like contractions were coming so fast that they had to slow them down because my wife was scheduled for a C-section with as big as my son was there's no way that she could have naturally just for her size. And she had our son. They wrapped him up, we saw him for about 30 seconds and then they took him to the NICU. At the hospital we were in, my wife went off to like recovering because like she got nauseous from the epidural, which is pretty common. And then I went up to the NICU and I'll never forget this Indian doctor came up to me and goes well, your son was born with a rare condition called Eagle Barrett syndrome. And I said what? And he kind of told me what it was. And he goes. What's going to happen is we're going to monitor him overnight. The local children's hospital from the north side of Atlanta is going to bring their transport team down, come get him and he's going to go up to there and nick you to watch. For at that point we didn't know how long. I looked at the doctor and said okay, his mother has not seen him yet. And I said this child is not leaving this hospital until his mother of all people who carried him for nine months at least gets a moment to see him before he leaves. I mean, I joked with him but I said I'm not going to live the rest of my life having to live that down. I said she's going to see him. He chuckled and he said that's not a problem, they'll bring him up to the room and everything. So he gets taken off to the local children's hospital.

Jason Tuttle:

Nowadays, when it comes to C-sections and all, typically, women are in and out in about three days. He was born in 2006 and it surprised me with the fact that she had a C-section and, as major of a surgery as that was, we were in and out in three days. The day she had it, they said you can rest for the next 18 hours, but in 18 hours you're getting up and walking. And I looked at him and I went now, granted, I'm very straightforward, you just gutted my wife like a deer and now you want her to get up and walk 18 hours after the fact. And they said yep, and I said what's the reasoning? And I said well, first of all, the more you lay down, more risk of blood clots. And then we've learned that the more you agitate the system, the more it makes it want to heal faster. And so I went OK.

Jason Tuttle:

But my wife, instead of being there three days on the second day was just like I've had enough of this, I want to see my son. And we walked out the door in two days instead of three. That was a feat unto itself. Kind of the latter end of kind of this part of our lives is we get up to the hospital. Kind of the latter end of kind of this part of our lives is we get up to the hospital. My son's in the NICU up there for approximately 11 days after he's born. They kind of drop the medical hammer on us. They go well, not only does he have the Eagle Barrett syndrome, we think he's going to have neurological delays and urological issues and respiratory issues, and they just lay it all out on us. And that was the first probably 12 days of us being parents. Is what that was.

Tanisha Adams :

Wow that is a really hard conversation to have with a parent, let alone being the parent that actually has to come to realization that we just had this miracle baby come into this world and now we have all these things to deal with. And so what was your mindset and your wife's mindset at the time when you heard this news?

Jason Tuttle:

The irony of what I'm about to say, based on what this podcast is going to be out. There was a period of grief because we went from everything was fine, we have no issues we have no reason to believe there's any issues to to almost grieving what our life was or was going to be, to where this is what it is. In the beginning, we just we had those moments where, for lack of better words, life just sucked, and just because we went from raising kids is never easy per se, but we went- from moderately difficult to very difficult in the blink of an eye.

Tanisha Adams :

Did you guys have a lot of medical personnel coming in and out of your home when you brought them home?

Jason Tuttle:

No, essentially, what had happened was while we were up in the NICU at the children's hospital, they had a team of people that came in there and I'll never forget it about Wednesday of that week I think my wife was. She might either she was either working from home or I don't know why she wasn't up there, but I went up there to see our son and my parents happened to be up there spending time with them and I'm kind of looking in his crib where he's sitting in kind of this open bay that they've got him in, and the head nurse comes up to me I'll never forget it was to my left side and she just starts listing all of these different things that they think of, what's going on and what they're going to do and what they think the prognosis is, and at that point it just hits me like I lose it. I'm just bawling. You know I've had moments where, before everything that has currently happened, I've had moments here and there where I've gotten emotional, but nothing like this. I mean, it's just like all of a sudden, out of the blue, a Mack truck came out of nowhere and just ran me over and I just I didn't know how to handle it. I didn't know how to take it.

Jason Tuttle:

It was just so much sitting on top of me, especially with the traditional sense of, well, I'm the protector, I'm the caretaker, I'm supposed to make things right, make sure things are okay and kind of take on the burden of the family. It's just in the traditional sense of being the husband and it just, you know, it hit me hard. And then a few minutes later my parents took me down to the cafeteria so we could have some lunch. And right in the middle of lunch again, it just hit me like a Mack truck, like I don't know what I'm going to do. I mean I'm thinking, well, is my insurance going to be enough for this? How am I going to afford this? What's life going to be like? Is just all these emotions kind of running through me?

Tanisha Adams :

After you guys got home from the hospital with your son. How old was he when you got to take him home?

Jason Tuttle:

He was only probably 13 or 14 days old. We were in that NICU a little less than two weeks, if I remember correctly. We weren't in there months per se or any grand length of time we were in there a lot more than what we ever thought we would have been in there Now.

Tanisha Adams :

did you guys have round-the the clock care that you had to give him?

Jason Tuttle:

Not initially, and I say that because at least for the first about five years of his life we were I hate to say it, but kind of winging it, because you know we would learn one thing or one characteristic and then something else would pop up and we'd have to learn that. And then we would learn all that and then something else would pop up. And so by the time we had about our fifth year, at that point I had literally seen enough of everything, where not a whole lot really surprised me, and so it was kind of trial and error, if you will. But in that five years, you know, like my son's rare condition, one of the side effects of his rare condition was he was susceptible to respiratory illnesses, meaning if he got like a pneumonia style cold in the beginning, if I didn't catch it fast enough, we were ultimately always admitted to the, admitted back into the ICU at the children's hospital we went to, and for the first five years of his life we were in and out of that hospital every six months.

Tanisha Adams :

So did he ever have an opportunity to go to school, or did you guys homeschool him due to the fear of him getting sick?

Jason Tuttle:

What basically happened was at the time my degree is in education. I taught elementary school physical education for eight and a half years before I left to become a stay-at-home parent and in that first year that I was still working and with my son and his issue it was actually at the school I was at. One of the parents who was a stay-at-home mother that had like five or six kids that literally lived two streets down from the school I was working at said if you need somebody to watch them, you know I'll watch them. She said I know daycares are really expensive. All I'll ask is just kind of a fraction of what you would pay for daycare. I mean, like I literally paid her like maybe a hundred. I think it was $150 a week for her to watch them, which you know.

Jason Tuttle:

we all know what daycare is. That's a steal. She watched them until the end of the school year. She watched them until the end of the school year and then at the time my parents were young enough to where they watched them as I worked, until my son was I think it was he was four and in the county next to mine there's a private special needs school that he got admitted to. That he went to for two or three years and so did his sister, because his sister has medical disabilities and all that. And the only reason why we left that school was because special needs schools are great but they're all out of pocket and even with the scholarships we were getting for that school, with two kids with multiple disabilities going to this school and every year getting even more expensive, we just finally got to a point where we couldn't afford it anymore, especially on what I was making. And then we transitioned them into the county that we live in and they've been doing self-contained special education classrooms ever since.

Tanisha Adams :

So there was no way you could sign up to get a grant to go to private school.

Jason Tuttle:

Well, I'm in Georgia, and in the state of Georgia it was after we had left the private special needs school that they came up with a bill called SB 10, which basically meant that if you had a child in a public school system setting and you could prove that the school system was not meeting their needs, then the state of Georgia would give you a. It wouldn't pay for everything, but a reasonable stipend to give to you to allow you to go to a private school that would meet their needs is essentially what would it would come down. However, trying to prove that the county school system was not meeting your child's needs was rather difficult. Now, now, granted the the teachers that my kids had I really liked. I thought they were meeting the needs, and so I never really felt the need to pursue that.

Tanisha Adams :

Right, it's so crazy how every state is different when it comes to that, but I think it should be like worldwide that they have some type of funding for children with disabilities, such as your children, for them to go to private school because them being in public school public school is not good for any kids nowadays.

Jason Tuttle:

When I'm back in the school system. I'm not. I was a certified teacher, but I was. I was gone for so long that my certifications lapsed, so I'm back in as a paraprofessional or teacher's aide right now, and I'm actually back into a self. I'm in a self-contained environment as well, and even I would probably agree with that statement.

Tanisha Adams :

It's pretty crazy how things have changed from the time that we were. I'm 45. Yeah, and I don't know how young you are, but at my age, when I was younger, schooling was so different than what I see today. My daughter's now 18. Let's just talk about elementary school alone.

Tanisha Adams :

It was very difficult for her to be in public school.

Tanisha Adams :

In the elementary school system, even though she had an IEP, they still were not being able to follow through with the services that she needed to be able to help her stay focused and follow through with studies, and I ended up having to put her into private school because of that. And then eventually, her last two years school, or three years now she's done homeschooling, because it's really difficult as a parent to see your child falling behind and not being able to grasp when they should be, and I think it's because nowadays teachers are more like babysitters than they are teachers teaching anything. Because students have so many challenges. Of behavioral challenges they're dealing with the behaviors more so than they can teach a class. Of behavioral challenges, they're dealing with the behaviors more so than they can teach a class. And so when you've got a child that already has disabilities, it's impossible for them to sit and focus on anything because there's so much that's going on around them. Is that what you've seen, too, for your own child during that time?

Jason Tuttle:

Honestly, I've been very fortunate where I've had some very caring, understanding, willing to work with my kids, kind of teachers. Now, granted, I tend to think of myself as maybe not the norm as it comes to parents, in the sense of I worked in the school system, I'm currently working in the school system. I worked in the school system, I'm currently working in the school system. So I've got kind of an inside view outside of the fact that I've been doing the whole special needs journey for now 18 years. And so, like I have told my son and my daughter's teachers, I said, look, I said I'm hopeful that X, Y and Z will happen.

Jason Tuttle:

However, I am realistic in the sense that you know my daughter, who's still around, she'll be 16 this year, but she neurologically functions four to six years old and the fact that the older she gets, the bigger that gap gets. Would I love her to get all the way up to 16 years old? Yes, Is that? Is that gap insurmountable at this point? Most likely, yes, that's a large gap to overcome. In the sense I get along with the teachers well, just because I'm just like, look, I'm more thinking now. Instead of worrying about math, science and all that, I'm more concerned about you teaching them life skills on how to do things versus necessarily understanding the science of something or the math of something.

Jason Tuttle:

Yeah, they need to know that, but she needs to know a little more basic skill versus that before she gets to that point the education side of me working there. The number one complaint I have about working in a self-contained environment is I've run across numerous parents that when they hand their child off to me as the teacher per se, they may not say but I get this body language of, they are now your problem for seven and a half hours, because now that child may be a lot to handle. I get it. I've had moments in my life where I've had a lot going on, but I have seen that it's your problem kind of mentality more often than not.

Jason Tuttle:

And I want to, but yet when I don't do something that they request and they get upset at me, I go how are you getting upset at me when we send you stuff home and you refuse to do it? But then you wonder why they're not making any progress. It's not working here. We can only do so much in a seven and a half hour a day because your kid is not the only child in that room and I'm not using that as an excuse, but I've got three other kids that all have similar kind of obstacles that I have to work with. On top of your child, you have to help at home.

Tanisha Adams :

Right. I agree with that a hundred percent. I had to be able to teach my daughter behavioral skills and to teach her how to be able to handle certain things so when she did go to school she could handle the environment that was going on around her. Today she's 18 years old and she, even though she does have her moments, she also has the most positive mindset now and a lot of people don't even realize she has a disability unless they get to know her a little bit longer and then they would see it. But I was even telling her today how proud I am of her, the things that she's learned, how she's been able to overcome those challenges, because she's been taught how to focus, how to not allow negative thoughts to control her mind, how to like if she can't do something, it's okay that she doesn't have to get upset, that she can go back to it if she needs to. You know just little life skills like that, but, like you said, it is the parent's job to teach them those life skills as well.

Jason Tuttle:

Exactly.

Tanisha Adams :

I 100% agree with that. So we'll go back to your son. You had to end up homeschooling him, correct?

Jason Tuttle:

No, he was in the county school. I don't, even though I've worked in education. I don't have the patience or the understanding to do homeschooling, so any parent that decides that they want to until they graduate. I have all the respect in the world for them. But I did work very closely with the educators that he did have, especially with the fact that I was a stay at home father for 12 years of his life.

Tanisha Adams :

Okay, so you were the stay at home. You didn't homeschool, okay. And then, by you being stay at home. How do you think that helped him? With you being present in his schooling, though? You had that relationship with the teachers. You had that relationship with the school. Being a father of somebody who has a disability, such as your son how do you think that helped him with his education?

Jason Tuttle:

I think, just the consistency of it, because even with his sister now, I was constantly telling him just because you do this at school, you still have to do it at home. Don't think, because you can come home, well, we're home with daddy and we don't have to do it anymore. That's not how it works. You have to. If you're learning to walk at school or you're learning to use your silverware, you're learning to whatever it is, you still have to do it at home. This is something that you do, no matter the situation that you're in, and so I think that really, that helped them in the sense of I was trying to make it as uniform as possible at home. However, one of the difficult parts is I'd go into these IEP meetings for both of my son and daughter and I would have a OT, pt and speech for both of them. Ot, pt and speech all had four different things I needed to work on for each child and they would all say, well, all of these things are important.

Jason Tuttle:

I said my kids get home at 3.30. I get them kind of changed to relax and going at about four assuming I don't give them a bath that evening, I have to get dinner ready, get them going. After that, if I do give them a bath, give them a bath. And then I said if I do all of this stuff, they will never have any free time. And I said I'm very much a big proponent that when they come home I'm going to give them time just to veg out for a minute.

Jason Tuttle:

They've been in schools, even with their disabilities. They've been in school seven and a half hours of a day. I'm not going to just ram it down their throat the moment they get home. And so I finally in the IEP meeting, said look, all of you come up with your top thing that I need to work on. If we get through it fast or we master it. Then you come up with a list that this is top priority, this is number two, this is number three, this is number four. And then I'll do it that way, I said, because otherwise there's not enough time in the day.

Tanisha Adams :

Exactly I agree with that, because when we did our IUP it was ABA therapy, language therapy, we had sensory therapy, we had all of that and it was a lot. It was truly a lot, and especially when a child with disabilities, when they come home they're already on overload and so sensory overload, all kinds of overload, so they do need that time to just kind of relax a little bit. I mean, it's the same with anybody. If you were at work all day long, you come home the first thing you want to do is kick your shoes off you don't want to talk about work or anything of that manner.

Tanisha Adams :

So I agree with you a hundred percent give them that time to relax and then if there's something that you can work with them for 30 minutes a day for me it was my daughter and I. We got home at three, three, 30. We, I let her relax, we put her stuff away. She was very OCD about things, had to be a certain place in a certain way, and so we made sure that she had the things that she needed and certain things. Certain way, everything was a routine. So it was get home at three, 34 o'clock, we would do dinner and then therapy, and then seven o'clock we'd take a bath and about eight, eight, 30, she was in bed. Those are the things that were really important to have that routine for her, and I think that's what you were saying, that you did with yours.

Jason Tuttle:

Yes, as a stay-at-home father for 12 years and I'm routine-oriented, naturally. But for my kids I noticed that they functioned better when they knew what was coming and it was literally the same thing every day. Better when they knew what was coming and it was literally the same thing every day. So, for example, when, because I had two kids in wheelchairs, the lift bus came directly to my house and what would happen would be they would get home at three, 34 o'clock, I'd bring them both in. I positioned their wheelchairs. I'd lock their wheels. I get one out, put them on the floor. I get her out, put her on the floor. I'd move their wheelchairs out of the way. I'd lock their wheels. I'd get one out, put them on the floor. I'd get her out, put her on the floor. I'd move their wheelchairs out of the way. I'd get their shoes and their braces off. I'd put all that on their wheelchairs.

Jason Tuttle:

I'd undress them to get them kind of in their lounge wear and then I would get them their toys and I'd go make them a beverage and they'd have that, and then, if I wasn't giving them a bath that night, we'd have some lounge time and then I would go and cook dinner my kids could walk with assistants, but not by themselves.

Jason Tuttle:

So I either had to walk behind them or I would have to carry them.

Jason Tuttle:

And so when dinner time came around, I'd either walk them to the kitchen table or I would literally carry them and put them in a chair at the kitchen table and I'd have one child over here and one child over here and I'd feed one one bite and feed one the other, one the other bite.

Jason Tuttle:

I'd do that back and forth till they finished. And then you know we again, if I wasn't giving them a bath, I would sit them in you know their chair and their like their spots on the couch and give them their toys, and we'd lounge for a while and then, right about 10 minutes before bedtime, both of them took several seizure medications. So I'd prep their medicines, I'd get them both on the floor, I'd give them their medications, I'd change them again the floor, I'd give them their medications, I'd change them again, and then my daughter would go to bed about 7.30. I'd keep my son up for about another hour longer than I put my son to bed, and then my wife and I would be in our room to whenever we went to bed and we would be wash, rinse and repeat every day.

Tanisha Adams :

Just listening to that is exhausting. I can't imagine like all of the energy that you had to have to even do all of that. That's first of all. My heart goes out to you because that was a lot, and I know that you're a phenomenal father to even just take the time to be selfless enough to help this other human being to live a life, the way that you've been able to give them. And we're going to get into the part of the grieving your son because unfortunately he's no longer here with us. So he lived 15 years of his life with you. I don't know how comfortable you feel about how he passed away. That's up to you if you want to share that. But you did start letters to Zachary because that was your way of grieving was to write letters to him.

Tanisha Adams :

So I'm going to let you go ahead and take the story from there.

Jason Tuttle:

Okay. So my son of the two of my, of my son and daughter he was always the more medically fragile he was, always he was the one that spent the most time in the hospital. So let's see if I can condense this story, cause it can be lengthy. About three days before he passed he came home. I made him one of his favorite meals. He ate like a horse.

Jason Tuttle:

I put his sister to bed about seven 30. I kept him up about an hour longer just to give him some one-on-one time with myself and his mother. And that night we went to go brush his teeth and he gagged and threw up a little bit. Didn't think much about it. We thought, you know, we probably hit his gag reflex and there was something in there and just came up. So we put him to bed that night and he has been a good sleeper since day one. We have never had sleeping issues with either of them, and so that night he was up and down all night, didn't really want to sleep, that kind of thing, and we've for both of us. We were just kind of like that's unusual, and so I was a stay at home parent at the time and I just told my wife. I said you know what, I'm going to keep him home tomorrow. He may have a 24-hour virus, which he's gotten many times in his life. And I said I'm going to keep him home because if he's contagious I don't want to send him to a self-contained classroom with other medically fragile children and spread it around. So I texted the teacher that next morning and said hey, I'm going to keep them home. She said great, we'll see. Let's see, that's Thursday. The night before was Wednesday, that was Thursday and I said if he's feeling better I'll send him back Friday. Okay, great, we'll see him Friday.

Jason Tuttle:

Well, sent my daughter off to school and I got him up. I let him rest and I got him up about eight 30 that morning. I sat him in his favorite chair and I told him I said buddy, you can crash at any time. I know you didn't sleep well last night. You're not missing anything. Daddy's going to be sitting on the couch with his laptop getting some work done.

Jason Tuttle:

He refused to fall asleep on that Thursday. Couldn't figure out why. Didn't really want to drink a whole lot. You know, for one day not drinking a lot, it didn't really strike me. Now, if it had gone more than one day I would have gone hey, something's going on, he's not wanting to drink, and so. But at that point nothing struck me. And so we got to that evening and that instead of keeping him up an hour, I just put him to bed at the same time as sister. He got quiet instantly, didn't think anything about it, I just figured he was exhausted. He didn't sleep the night forward, didn't sleep all day. I figured he just just passed out Cause he was just so tired.

Jason Tuttle:

I told my wife at that point. I said I think. I said I'm going to keep him out on Friday. I said if he's not feeling well. I said at least we've got the weekend to get through and then if he, when he feels better, we can send them back on Monday. Same thing, texas teacher. She said okay, see you Monday.

Jason Tuttle:

Got my daughter up on that Friday, sent her off to school, waited till about the normal time that we would get our kids up on the weekend, walked into his room. Now, typically when I walk into his room he'll get, get, he'll bounce and get really excited and be happy to see me and all that. And when I walked in there he was awake, kind of looking at me, but he didn't really bounce and he was just kind of laying there and that struck me and so I went over to his right side and I noticed a dark green streak of liquid coming out of his mouth. And in all the medical dramas I've watched I went huh, the only thing that's dark green is bile. And why is bile coming out of his mouth? This is not good.

Jason Tuttle:

And so I go to pick him up and he's floppy and lethargic. And that didn't really strike me because I've had one or two times where he was really sick with like a respiratory virus and he had been that way and so nothing really sent off signals to me to say hey, something's really serious. So I get them out in the living room and I do my medical protocol in my head. You know I give him a catheter because his rare condition. From time to time I'd have to drain his bladder with a catheter. So I that didn't get a whole lot out and typically, because of his rare condition, typically his midsection was kind of pliable and spongy.

Jason Tuttle:

Well, that day it was rock hard, like brick rock hard, and it caught my attention and so you know I'm kind of in my even though things are going in real time in my head it's slowing down, just so I can comprehend what's going on, trying to figure out what I'm going to do. And I just look at my wife and I go something's not right and it was honestly just a hunch. I went, I'm gonna take him up to the children's hospital, said something's, something's off, and I don't know what it is. And you know, because my son was non-bal, I got to where I could read nonverbal cues from him very well, like to the point I almost knew he was sick before he was sick. And so I said I'm going to get him dressed, I'm going to put him in his chair, we're going up to the hospital.

Jason Tuttle:

My wife said okay, my wife was working at home at the time, and so I get him in the van and, like I'm in Atlanta, I'm on the Southwest side of Atlanta. The hospital that he goes to, the children's hospital, is on the Northwest side of excuse me, Northeast side of Atlanta. It's 65 miles from where I live and that sounds like a lot, but anybody that lives in Atlanta knows that Atlanta takes up North Georgia and 65 miles is nothing. And so I get on the interstate from where I'm at and I'm doing like 90 up there because I don't know what's going on At the time. I think he's falling asleep and waking up. What I later realized is he's falling in and out of consciousness and I don't realize it at the time. So I get through Atlanta with Atlanta's horrible traffic.

Jason Tuttle:

I get to the hospital, I get him out of the van at the hospital and he's very floppy, like it catches my attention. I go, oh, something's really wrong. So I get up to the ER. I skip the line and before I get up to the like the nurse's station, the security guard comes over to me as if to yell at me to say, hey, you need to get in line. And before he can say anything, I go he's not breathing, I need help now. And so he looks at the nurse and kind of whistles at her. She comes over. I'd been in this hospital a hundred times. I've been in this ER probably 20 times. A hundred times. I've been in this ER probably 20 times.

Jason Tuttle:

This is the first time I'd ever, with my son in his wheelchair, went at a full run as fast as I could run to an ER trauma room. We get in there. I instinctively get him out of his chair put him on the table and I back out of the way in hopes that they'll let me stay in there while they work on him, because he's nonverbal and he can't say anything to me. Luckily they do. There's another trauma room that's right next to us and the double doors are open and I kind of back off into there to let all the people because like literally 30 people came out of nowhere to start working on him and so they they immediately come in there, they cut all of his clothes off of them and the first thing that catches my attention is this guy takes this like drill looking thing and drills something directly into his knee. No pain medicine, nothing. And for a normal person, when you drill into bone you'd probably jump out of your skin based on the amount of pain that it would have been. He never even flinched.

Tanisha Adams :

And so.

Jason Tuttle:

I later found out that was some sort of port to get like medication or antibiotics into him very quickly. And he did that and they intubated him, which, for those that don't know, that's putting the tube into you to get into your lungs, to get air into your lungs, and they do that for a minute and they start CPR and they start doing chest compressions. Well, the head ER doc comes over to me and goes how long has he been this way, up to the minute, to the best of your recollection? And I tell her she goes off, she barks orders at him, she comes back, she goes explain to me this scenario as to why you brought him up here.

Jason Tuttle:

And I told her she goes back off and barks orders at him and then, no more than she does that they get the paddles out and you know it's like the old. They get out the. They rub them together with the gel on them. Nowadays it's not that, it's more like stickers that they put on them and it's like an Xbox looking thing that they've got off to the side, that they've got off to the side, and I hear them yell clear and they hit it and he literally raises off the table like what they do like a medical drama. Now what I'm watching is is I'm watching that monitor for his respiratory rate Cause I'm so used to looking at it for all of his respiratory related illnesses and it goes boop and goes right back to what it's doing and in that moment in my brain, even though it doesn't register in my brain, I go he's not coming back.

Jason Tuttle:

Now at this point they had been working on him about 10 minutes. They continued doing this entire scenario for 45 continuous more minutes and it was the longest I would. In fact, I told the ER doc. I said TV doesn't do y'all justice. I said because I never expected y'all to work that long trying to save my son's life. And I said and I do appreciate it, but so they do that it comes down to where they eventually shock him four or five more times and it just nothing works. And she finally walks over to me and goes well, we can shock them again. But she said I think the outcome's going to be the same. And I said well, this is out of my medical wheelhouse, it's up to your professional opinion, do what you got to do. And so they do it one more time and they pronounce them.

Jason Tuttle:

I walk off into the other room and, kind of, I have a moment for myself, as anyone would, and then I immediately have to compartmentalize because I'm just like I need to know answers for all these different things. It'll make me feel better in this moment, despite what I'm witnessing. And so before that, I have to call his mother, who thinks at the moment that I'm calling him that he was going to be admitted. He'd be there seven or eight days and he'd come back home to tell her that her son was dead on a table. I will never forget the sound she made over that phone. And then I had to call my mother, his grandmother, who watched him a lot. The same thing, and I'll never forget her response.

Jason Tuttle:

Now, later on down the road, my mother goes you were oddly calm when you called me. She said you just watched Zachary die and it was like nothing had happened. And I said I had to be that way because I needed to know certain things so that I could relate to you guys. And for you know, are they going to do an autopsy? What, what, who do I need to contact to get them to a funeral home? All those kinds of answers.

Jason Tuttle:

And so, um, you know, the care team comes in, we get all that answered and they let me stay with my son. They said we don't need this trauma room for any time soon. You can't be here all day, but we don't necessarily need it anytime soon. And so I'm sitting there with my son waiting for cause. My wife is having her parents drive her up, and so I'm waiting on them to come up.

Jason Tuttle:

And the two things I'll never forget is one how fast he went from a warm temperature to ice cold and then, after we had spent our time with him and we left him there, like to go home, to go to a funeral home, I had to pile up all of his cutoff clothes on his empty wheelchair and walk it through that hospital to put it in our van to drive 65 miles home without them. That was the longest, quietest drive I have ever had. I'll never forget it. And so you know that was from the start to finish. Per se, it was 36 hours before it was that fast. 36 hours sounds like a lot of time but in reality it's not.

Tanisha Adams :

Well, and you weren't even prepared because you weren't expecting that to be the outcome.

Jason Tuttle:

No. As a special needs parent with a child with a chronic illness, it's always kind of on the back of your mind that it's a possibility, but you don't really think it's ever going to come to fruition.

Tanisha Adams :

Right. So you obviously had to go through various different stages of grieving, and one stage that you went through was writing letters to Zachary. When did that start?

Jason Tuttle:

I'm a big proponent of therapy and counseling, and right after everything had happened I started going back to therapy. It was probably about the fifth or sixth session I'd gone back, cause at that point I was going weekly. It was my therapist that said have you ever thought about journaling? And the irony of all of this is I went. You know, I don't know how good of a writer I am, I don't know if that's my thing, and she goes we'll keep it on the back burner, she said.

Jason Tuttle:

Even if you don't do anything, keep it as an option. She said. Even if you write it out and then burn it, at least you're getting it out. You don't necessarily have to share it with anybody, and even still, you know, it was probably eight months that it sat on my side table before I ever wrote a letter, and even for about two or three more months after that I wrote letters for me. I literally one day I was having a hard time dealing with losing my son, and so I got into a word document and in proper letter form a day, dear Zachary, and wrote in letter form exactly how I felt, and I mean it was one of those. If I felt like I needed to have an expletive laden letter, then that's how I wrote it. If I was if.

Jason Tuttle:

I was angry or mad. That's how I wrote it, and the kind of the shtick of letters to Zachary and even people when I was first introducing them to just my writing is look, I'm not going to sugarcoat. You need to see the good, the bad and the ugly of this. If this is going to offend you or trigger you, move on. I said, because I'm not sugarcoating this, this is how I'm feeling exactly in the moment. I said what you see on TV is great and wonderful, but that's not. That's not the reality of grief. Grief is ugly, especially in the beginning. Grief is ugly especially in the beginning.

Jason Tuttle:

And so I wrote it for myself and I actually found a group that was parents who had lost a special needs child. I'm surprised I even found it because that's a very specialized niche group, and especially in grief. And so I got to know the admin very well and one day I just said do you mind if I start a post like my journal entry? Admin, very well, and one day I just said do you mind if I start a post like my journal entry and she goes? No, we'd love for you to have she, she, she goes. We get so few men in here that want to post.

Jason Tuttle:

And so I did, and I had to prepare myself. I said, no, I could get a really good response or I could get a very negative response, and I have to be prepared for both. So am I willing to risk, with the state of emotion I'm in right now, to post this, knowing that I could get a negative response and so the way I am in my brain, I went screw it, I'll do it anyway. And so I posted in there and I immediately got a big response. I had a lot of the women in there, a lot of very positive response. I had one woman go. She said I have never told anybody exactly how I felt deep inside of me. I haven't told my husband, I haven't told my other kids nothing. And you have nailed exactly how I feel, word for word.

Jason Tuttle:

And I said well, I appreciate that resonates with you, and I said that you could relate to it. I said but this is inspired by my son and so for weeks after that about once a week I would do it every time I was getting this kind of response. So if I hadn't gotten those responses, we wouldn't even be talking here today. So I did that and after several weeks I started getting people going well, have you ever thought this is really good? Have you ever thought about doing a podcast? No, I don't have the headspace for that at this point. Well, have you ever thought about writing a book? I don't. At that point I didn't have what I thought was enough material to even start a book. And then so they went Did you keep all?

Tanisha Adams :

your letters.

Jason Tuttle:

I do. I've got a two inch binder by my feet right now. That-.

Tanisha Adams :

Wow.

Jason Tuttle:

I've got them in writing there and I've got them saved on my laptop and I've got them backed up just because at some point I may do it, and so I wanted to make sure that I had it. So we went through all these options. Finally, someone said well, have you ever thought about doing like a Facebook page? At least at that point you just copy and paste. And I said I could do that. And so I did that and, like a lot of pages, I start off with 10, 20 people on it friends, family, that kind of thing. One day out of the blue I was trying to raise money for my kids for a special needs live fan. I got kind of in that mindset again of why I need to promote it. Based on the response I was getting in this group, I feel like I've got something here. What can I do to promote it? So I started literally emailing some of what I consider the bigger names in the grief community and I said, hey, my name is so-and-so.

Jason Tuttle:

I just started this page. This is from a father's perspective. I feel like I've got something here and I want to build on it. Can you just give me tips of things that work for you and things that did not work for you? And literally everybody was phenomenal.

Jason Tuttle:

I had a woman with a million and a half followers. Go sure, Well, if you're going to write a book, then you want to do A, B and C. If you're not going to write a book, you were going to want to do D, E and F. This is what you're going to want to do, this is what you might want to shy away from. And so all of them were that way. And now I'm in my ninth month of doing this. I've got over a thousand followers. I've got representation in 44 of the 50 US states and I've got representation and right now I think it's 26 countries of those that follow the page. So if you'd have told me nine months ago that I would be having this kind of following and doing your podcast and actually right now your podcast is my 31st episode in nine months- that's awesome, I love it.

Jason Tuttle:

And I mean I say that not to brag or anything, but I say that just because, again, if you'd have told me nine months ago, I would have done 31 episodes of podcasts and you know, and I would have gone. You're out of your mind.

Tanisha Adams :

Zachary's life and it's amazing what you've done and your purpose now is to help those that had children, whether they were handicapped or not. The grieving of a child is something that no parent should ever have to do ever. But you have probably healed numerous people that you've never met before just by your story and have helped them in their stages of grieving just by your story, and that's making a purpose for Zachary and it's a beautiful thing.

Jason Tuttle:

Oh yeah, you know, initially the page started off as just for men, because I couldn't find any men that maybe not at the exact same thing I was going through, but something similar.

Jason Tuttle:

And then I did that for a while and then I got to a point where I was just like, well, if I want a bigger following to reach more people, I've got to open it up more. And so it's still for men, but now it's for anybody that's lost someone I lost a parent, a spouse, a child, a brother, a sister, that kind of thing. It's even evolved a little more in the sense of I'm here to kind of give the female gender an understanding of what it's like for a man to grieve, kind of give them an inside look of how men grieve, what the kind of the process is, what they can kind of do to help open their significant other, at least make the circumstances favorable for them to open up. And so I feel like, if I can do that, then it. Whereas the man might not come to me directly, if the wife comes to him, he may come to me indirectly.

Jason Tuttle:

It's kind of what it's evolved to.

Tanisha Adams :

Because some men are very I don't want to say the word shy, but they're very secluded when it comes to their grieving, and so what you're doing is showing them. It's okay. It's okay to show that vulnerability for sure. Now you told me about a coloring book that you were working on. Would you tell my audience about that?

Jason Tuttle:

Yes, a couple of weeks ago and again, ironically, my podcasting search I came across a publishing company that was offering up, like, I guess, advertisement on like a newswire kind of thing to spread out to people people that were in podcasts and so I messaged her and I said hey, I'd be interested. I don't have a podcast, I said, but I do have a page, and I said I could certainly use the advertisement, just because I'm kind of riding some momentum that I'd like to continue with. And so we got to talking and I said well, honestly, I'd like to do something tangible that someone could hold in their hands, cause I me personally I'm very tactile, I'm very visual, and so I'd like something for people to hold. And she said were you considering doing a book? I said, but I don't know if that's necessarily what I want. And so we sat back and kind of mulled on it. She and I talked to her the next week. She said have you ever thought about doing a coloring book? And I said, well, that's a unique idea. And I said I'd certainly be open to it. And I said I'm of a generation and and to answer your question before, I'm 47, my generation, my generation being generation X. You know, adult coloring books have become popular and I said, well, I could certainly cater that to the adult side of this equation and it's definitely always good for the kids side of this equation. And so I said great. I said yeah, let's move forward on that.

Jason Tuttle:

And so basically what I did was I wanted a way to give back to the people that helped me out in the grief community. So essentially what happened was we created the website Letters to Zachary, which will be in the bio that you all see. You would go to that page Now right now it goes to the Belmont City Press, but eventually it'll be just letters to Zachary and so what would happen was you would go to that page, you'd hit a button called community projects and it would take you directly to a survey, and so if you were someone that had lost a child or lost a loved one, you could go to that survey and fill out that survey. And so what it would ask would be like, first name and last initial, the name of the person you lost. And then you'd go to the next part of the survey and it would tell you to list either small quotes or attributes about your loved one that you lost that kind of thing and you would compile all this information and then what would happen would be it would send it to the artist and then the artist would take either the quotes or the attributes and they would make one full coloring book page directly related to all of the information that you could hold in your hands for your loved one, that you could purchase and other people could use that purchased it, to kind of heal in the grieving process. So that was the first part of it.

Jason Tuttle:

The second part of it was I've had a lot of people kind of like you that had a podcast or a foundation or a website or something that they were promoting. So the pitch to them was not only can you do that for your loved one, there's a spot on that survey on the back where you can put in information on that survey, where it will list your podcast, your foundation, your website. So not only are you doing a memorial for your loved one on the back, you're getting advertisement in this book that anybody purchases that can direct them to your whatever you're promoting and you get free advertisement. So, oh, the side note. The side note is that anybody that filled out the survey it didn't cost them anything. So not only are you getting a page in this book free, you're also getting free advertisement in this, at no cost. The only real cost is going to be is, if you really want the coloring book, you're going to have to purchase it. And so, like I tell people, let's say the book is $25. I said, who are you going to advertise with and only spend $25? True, and I. And so nobody.

Jason Tuttle:

And so, and then the third fold, last fold of this is is I wanted to do a coloring book because a lot of us, like me, I have a daughter that lost her brother. So I could then take this coloring book, give it to her, give her something that she really likes to do. That's kind of a de-stressing activity that takes their mind off of what's happening. And then I, as the parent, while they're coloring, can kind of dumb down, if you will, difficult topics to talk to them while they're focused on their coloring, to kind of help get them through that, while they're doing this kind of mindfulness activity. And so that's the biggest reason why I did it, because it was something that was simplistic, that was de-stressing, that we could do during this very difficult time. And so yeah, that's what I'm doing Officially right now. The release date is August 16th, so we've got about another month at this point before it's released.

Tanisha Adams :

That is amazing and I am excited to look to see how this book turns out, and I think your story, like you said, is going to be so heartfelt for those that have lost loved ones, but especially those that have lost children. For sure. It also is something that children can use to help them this coloring book, for sure to help them overcome, you know, the loss of their parents or somebody that they love. So I love that idea.

Jason Tuttle:

I have to give the credit to the Belmont city press, who I'm doing it through. When we were bouncing off ideas, they were the one that came up with it and I just kind of ran with it, but it's my collaboration per se and so but yeah, I'll be. I have yet to get any like cover artwork for it. I should be getting it anytime, and so I'm curious as to what the front of it will look like at this point.

Tanisha Adams :

So again, like I said it'll be it'll be August 16th when it's released.

Tanisha Adams :

I love the idea. Thank you so much, jason. This has been so enlightening in a lot of ways For me. I started tearing up a little bit. I was trying not to cry. I don't want to like cause you to feel emotion while you're trying to tell your story, but it was so heartfelt and my condolences to you and your family for the loss of your son, but you are doing a very beautiful thing in his memory and, being a man that's grieving, putting that out there. I know it's tough, but it's for a major good cause and those of you that are listening. Jason has a Facebook, a TikTok, a Twitter, an Instagram and the website.

Tanisha Adams :

All of those links will be in the description and the bio, whether you're going to be reading the blog or you're going to be seeing the YouTube video or going to our Facebook page. Either way, it's all going to be there and, jason, thank you so much for being with us. I greatly appreciate you and give your family a hug for all of us.

Jason Tuttle:

Thank you so much for having me. I really enjoyed being on.

Tanisha Adams :

Absolutely.