Sunday, May 19, 2024

Episode #95: Dads Grieve Too: Breaking the Silence on How Men Handle Loss

Jason, a grieving father who lost his son with special needs, shares his journey. Highlighting the lack of support for grieving men, Jason describes his healing process through journaling and creating a Facebook page to offer a safe space for others.
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Letters to Zachary: How Jason Turned His Grief into a Safe Space Where Dads Grieve Too.

Show Notes:

Dads Grieve Too, How “Letters to Zachary” are Helping Others Heal

In this powerful interview, Jason, a father who tragically lost his 15-year-old son, shares his story of resilience and the unexpected path grief led him on. He sheds light on the challenges men often face when dealing with loss and the importance of open communication. Inspired by his son, Zachary, Jason created “Letters to Zachary,” a Facebook page offering support and a safe space for others navigating the difficult terrain of grief. This conversation is a must-watch for anyone seeking hope, understanding, and a sense of community after loss.

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Grief Support Resources mentioned:

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/


 

Jason Tuttle, a dedicated husband and father, navigates the complexities of raising two special needs children with rare conditions. In 2022, he faced the unimaginable loss of his 15-year-old son, Zachary. This experience ignited a passion to help others. Jason advocates for grieving fathers and finds solace in “Letters to Zachary,” his Facebook support page for those facing loss. Through his story, he offers hope and connection to a community facing similar challenges.

 


Episode #95: Dads Grieve Too: Breaking the Silence on How Men Handle Loss

Letters to Zachary: How Jason Turned His Grief into a Safe Space Where Dads Grieve Too.

(Recorded April 3, 2024)

Full Transcript of Interview:

Tonya: Jason, welcome to Water Prairie.

Jason: Thank you so much for having me.

Jason’s a, he’s a stay-at-home dad. We, we said that earlier in the intro and you have two, two, two children. Is that correct?

I do. I have two children. Uh, um, my son would have been 17 or 18 this year. My daughter’s 15.

Okay. So just, so teenage, teenage years here, let’s go back to early in, in life. Can you share a little bit about what it was like when they were young being a stay at home dad caring for multiple children with special needs?

Well, um, I will say in the beginning before either of my kids were born, it was kind of a doc, if you will, just, uh, we had no early warning or anything telling us either of our kids would have any issues.

Uh, 20 appointment where, you know, you find out the sex of the child. And even at that point, before we found out the sex of the child of our son, we had no reason to believe there are any issues. And then, you know, I’m a planner. So I wanted to know the sex of my child. My wife did not because, you know, that’s the last great surprise we had in life.

And so we playfully went back and forth and it was the ultrasound tech that goes. Well, would you like to know the sex of the child? And we played back and forth and then she goes, well, I’ve found an issue. I need to know what the sex of the child is. And so at that point we go, what’s the sex of the child.

And so she said, you’re having a boy and I come back and go, um, Well, why did you need to know the sex of the child? She said, well, because the issue I think it is, is rare in boys. It’s even rarer in girls. So I need, needed to know the sex of the child. And I said, well, can you tell me what it is? And I didn’t realize at the time, but she was just like, no, I’m sorry.

I can’t do that. I think that was more of a doctor relayed message versus a ultrasound tech relayed message. And so from that point, we went in to see perinatologists and specialists and. What it turned out to be was when my son was born, he was born with a rare condition called Eagle Barrett syndrome. Um, and the easiest way to describe it, they don’t still officially know what causes it.

They know it’s related to a kidney issue, which he only had one kidney. That one kidney was sustaining utero because fluid was backing up into it. Uh, he had an enlarged bladder. He had no abdominal muscles. Like no stomach muscles, period. And so because he didn’t have that, he didn’t have the force to be able to like cough things out.

His breathing was normal, but it was shallower. So what we found out within the first five years of his life was when he would get sick, he couldn’t cough it out and it would just sit on his lungs and it would compound and compound to where we would have taken the hospital. He’d get admitted. Well, fast forward a couple of years, uh, we start seeing a pulmonologist and I literally get all the home respiratory machines you can think of in his room.

And so from that point forward, when I would hear that specific cough that I always knew what it sounded like, I would go into my procedures of, I start with machine 4, and if none of those work after a certain number of times trying them, I’m up to the hospital. To try to get, and so ultimately that’s what led to many, many hospital stays for the first five years of his life.

So the Eagle Barrett syndrome is unto itself. On top of that, he was born with epilepsy. Uh, he had seizures. He was nonverbal. Uh, he was, even though he could walk with assistance, he was basically wheelchair-bound. He had neurological delays. So even though when he, when he passed, he was 15 years old. He functioned at about four to six years old, his entire life.

Uh, or at least, at least up until he got to that age. And so he. He had all of those issues that kind of combined to make up his total kind of picture of what he dealt with. Uh, from a parent side, we, it was his neurological that we believe was kind of the driving force of everything, uh, with his delays.

So we had him. At that point, I was working. I wasn’t necessarily a stay-at-home parent at that point. Uh, my wife and I always decided that we wanted to have another child, and after having a child with that many needs, I, you can only imagine kind of the backlash from family we got. And so about 2 years later, we had our daughter, and at least in the beginning, she was our normal child because at that point, we saw no delays, no issues, nothing.

And at about 6 months in, we had an occupational therapist come into the house, and she had an intern with her, and that intern was doing the Peabody skills assessment test. And so it was the OT that says, do you mind if she practices on your daughter while I work with your son so she can get practice on it?

I said, sure. I know what that test runs my insurance company. If y’all want to give that to me for free. And so they did. And she came back and said, what’s my professional opinion that your daughter’s delayed? Well, I can tell you at that point with everything going on, that’s not what I wanted to hear.

And I, I will admit I was kind of rude to the girl because I was, I literally told her to pack up her blank and get out of my house is what my exact words were because I was just like, I’ve got so much going on now. I can’t handle another child. Having issues. So we went to go see our doctor, doctor came back.

I think you need to make an appointment with a neurologist for your daughter. At that point, it kind of hit me. I was just like, okay, we’ll go make an appointment. Let’s spread some time out. And later on down the road, my daughter was later diagnosed with epilepsy, just like her brother. She had seizures, uh, of the six different kinds of seizures.

We’ve seen four of them in my house. She was, even though she can walk with assistance, she needs a wheelchair as well. Uh, we believe her neurological issues that she has, uh, is affecting her balance. So we don’t know if she’ll ever walk unassisted or not. Even still to this day, but she was born with epilepsy with seizure.

She was also nonverbal. She was also basically in a wheelchair. She also had severe developmental delays. So just like her brother, even though she’s now 15, almost 16, 16, she functions at about four to six years old. Even though I’m hopeful that she’ll gain some of the ground, I’m realistic and I’m realistic in the sense of We have such a delay at this point.

I don’t think she’ll ever overcome that much amount of time as much as I would love for her to, I’m more realistic about it. And I’m of the viewpoint. Well, I don’t know if she’ll recover that much time to get as normal as possible. So I need to work with what I’ve got and see what we can do with what I’ve got.

And so this all goes into, um, my career before I left was education. I taught elementary school physical education for 9 years. And so that last year I was there, I was in and out so much that I was essentially working for free. And so I eventually went up to my principal and said, look. I know what it’s going to mean if I break a contract in the school system in the middle of the year.

I said, but here’s what I’m up against. And I said, it’s got to give somewhere and it’s not going to give it home. So that means the only place left for it to give anywhere is going to be here. And I said, that’s not fair to you, the school system or the kids. I said, because I’ve got a lot of stress at the house.

Because of just everything we’re dealing with. So in the middle of that year, I resigned. And I, from that point forward, I was a stay-at-home parent for 12 years. My daily routine, whether, uh, whether he was at school or not for both of them, was I’d get them up, I’d, you know, get them dressed and change. I’d give them all their medications, depending on their health, meaning if he was sick or not, if he was kind of under the weather, I would go through all of my respiratory kind of protocol that I had with all this machinery and try to help clear him up and get him going for the day.

And I would, for my son, I would do that 3 or 4 times a day, especially when he wasn’t feeling well to kind of keep on top of it. Of the two of my kids, even though they have almost the identical issues, it was my son that was more medically fragile. My, my son was the one that spent the most time in the hospital.

My daughter in her entire life has been in the hospital twice. So my daily routine kind of coordinated around both of their care, what their doctor’s visits were, if I was in the hospital, um, um, what I was kind of doing around the house. And then after all that was done at normal life, I would then have to go into, well, what does OTPT and speech at school want me to do at home?

And I had to do 3 different things for each of those specialties times 2 kids. And so, it’s just, it was busy, um, most days. And then if I were in the hospital with my son, which every time I went, I would go with him. The moment he got admitted, I was there with him until he left. Like I literally never left the hospital.

I stayed in that room because he was nonverbal. And so when a doctor would come in, I would have 15 years worth of medical knowledge in my head that I could tell them to give them a better idea of how to treat him versus them just looking at monitors, trying to figure out how he’s feeling in the moment.

So that was kind of my, normal daily routine with my kids, uh, through, uh, through all of my son’s life and, and it’s a little less for my daughter at this point.

You described your son’s rare condition, but then you also mentioned that he would have been 18, did you say?

Yes, this year he would have been 18.

So tell me about his passing. What, what happened later?

Okay. So typically in an evening when my kids would come home, we would kind of do our routine. I’d feed them both. And then I would put my daughter to bed early about an hour before. And then my son would come with me and my wife into our bedroom to kind of have some one on one time just because I love my daughter.

But my daughter can be a lot to handle at times with. You know, she may be 15 and functioned at four to six, but she still has all the teenagery stuff that goes along with it. And so my son throughout his life has had many, what I would call a 24-hour bugs illness wise, you know, something you get, you feel like garbage for about a day.

You recover from it, you move on. So about three days before everything happened, he got home. We fed our kids and put my daughter to bed. We fed him. He ate like a horse. We brought him into our room and then right before bed, uh, like we would use an electric toothbrush from because he liked the vibration for his sensory issues on his teeth.

So my wife was brushing his teeth and honestly at the time we thought she went a little too far back. She hit his gag reflex and he threw up a little bit. And so it kind of surprised us, and I looked at him and went, Well, maybe you went a little too far back. It just caught him and made him throw up what was in his throat.

Kind of thing. Didn’t think anything about it. So at that point, we put him to bed. We think he’s going to go to sleep. We’ll get him up in the morning. You know, I’ll send him to school. And I mean, at this point, I’m still a stay-at-home parent. So that night, he’s up and down literally all night, and that’s very unusual for him.

So he’s up and down all night. The, uh, uh, he kind of crashes early in the morning. So I, I let him sleep in for a few more hours just to give him some rest, get my daughter up, send her to school, that kind of thing. And then we, uh, about eight 39 o’clock, we get them up and he’s up and. You know, I bring him out in the living room and he just doesn’t look like he’s feeling well at this point.

I’ve texted his teacher and said, cause he’s in a self-contained classroom. I said, look, son’s not feeling well, not sure what it is. Don’t know if it’s contagious. He’s not coming to school. Don’t want to spread it to your classroom. And so she’s always been really good. Thank you for thank you for keeping him home.

Let us know how things are going. Okay. So I keep them home that day. And the entire day I look at him and go, buddy, you can take a nap, but he absolutely refused. And I’m just like, buddy, you see that couch over there? I’m gonna be sitting on it. That’s all I’m gonna be doing. You’re not gonna be missing anything.

But he refused to take a nap. And so that evening we put our daughter to bed and I said, I’m gonna give you another hour of sleep. I’m gonna put you to bed the same time as your sister. Put him in bed. Don’t hear anything about it. We just think he’s exhausted. He’s crashed early. He’ll get a good night rest.

He’ll be okay in the morning. And so I put him to bed and I tell my wife, I said, well, depending on how he’s doing in the morning, I said, I may keep him home because this is. That first, it was Wednesday into Thursday. This is Thursday into Friday. I said, if I keep them home tomorrow, it’ll just go right into a holiday.

And then we’ll have all these additional days for him to recover. And I won’t have to worry about him giving something to the school. So don’t hear him all night. We think he’s fine. We get his sister ups and get her ready. Send her off to school same time, eight 39 o’clock. We go in there and he’s awake.

And he kind of looks at us. And I walk over to his left side and I notice there’s this dark green streak of something coming out of his mouth. And in all my medical knowledge, I go, the only thing I know that’s dark green that can come out of your body is bile. And why is bile coming out of his mouth? So I go to pick it like scoop him up to pick him up and he’s really floppy like he can’t hold himself up.

That doesn’t really strike me just because it’s happened before when he’s gotten really sick when we’ve had to go to the hospital and he recovered in the hospital. Don’t think much about it. So I get him out in the living room. I kind of go through my checklist of what I need to do. He’s still kind of lethargic, kind of floppy and I, and I feel his midsection and his midsection is like concrete cinder block rock hard.

And at this point, I don’t know what this is. And so it was just a gut hunch. I went, I looked at my wife and I said, I’m going to take him to the hospital. Said something’s not right. And I don’t know what it is. I said, it’s not respiratory-related. I said, his midsection concerns me. I’m going to take him up.

So I get him in his wheelchair. I get him in the van. You know, I pull out of the driveway. I call my mother who, who watched him for a while when he was younger and said, taking Zach up to the hospital. Here’s what’s going on. I’m not sure what’s going on. You know, I literally told her, I said, I think he might be admitted.

I said, I said, I think he’ll be for a couple of days. And then we should come home was what my comment was. Well, I live on the Southwest side of Atlanta and the hospital for our children’s hospitals on the North side of Atlanta, it’s approximately 60 miles away is what it is. So I get on the interstate and I’m doing like 90.

Because at this point, I don’t know what’s going on. He looks like he’s fading in and out. He looks like he’s trying to like go to sleep and like with a concussion, you don’t want someone to fall asleep right after they’ve had a concussion. So this whole time I’m going, buddy, stay with me. Stay with me, you know, stay awake, stay awake kind of thing.

And so I get through Atlanta and right before my exit to get off, to get to the children’s hospital on the board goes. Wreck all lanes blocked. And so I, I get up there and in my head, I’m kind of freaking out a little bit. So we’re just crawling and we crawl for about 15 minutes and I finally get up to the front.

And I don’t know if that road crew was signaling me through, but he didn’t know what was going on in my van. And I floored it to get through there. And I could see him almost swearing at me behind me and in my rear view mirror. So I get up to the hospital. I get him out of the van to put him in his wheelchair.

And he’s really floppy more so than what I’ve been used to. I get him up to the E. R. and I skipped the line to like go up to the desk and so I can see a security guard coming to me as if to say, well, you know, there’s a line there. You need to get in line. And right before he can say something to me, I go, I don’t think he’s breathing.

I need some help. At that point. He looks at the nurse and snaps his fingers and says something to her. And we literally full speed run to the back to an E. R. trauma room. So we get in that E. R. trauma room because I’ve been in the hospital so much. I instinctively undo his chair. I pick him up. I put him on the table and I back off as if as if to go.

I want to be in the room while you’re working, but I don’t want to be in your way. Because I didn’t want him kicking me out and him being nonverbal, me not being able to tell them what was going on. So there was another ER trauma room right next to it with the doors open and nothing was in there. I backed out in there.

We get in there, I put him on the gurney or the table that’s there, 30 people come out of just nowhere. And they’re on all sides of them. They immediately cut his clothes off. They put a line in him to try to get antibiotics in them. They immediately start chest compressions on him. And I’m sitting here watching this.

The head ER doc comes to me and goes to the best of your recollection down to the minute. How long has he been this way? I said, well, I came from this county. I said he was this way about 10 minutes before. So I said about 40 minutes plus or minus about 2 or 3 minutes for however long it took me to get up in here in here.

Okay. She goes over there. She barks orders to him. They all kind of start doing their thing and she comes back to me and she goes, explain to me why you brought him up here. And so I tell her everything that’s going on and what my background is with him and what his issues are and she goes, okay, she goes over there and starts just barking orders at him and what they need to do and how they need to do it almost like a precision army.

So, they do that and at this point, they’ve been doing CPR on and off for about 10 minutes. And they then get the paddles that, you know, traditionally it’s the, the, where they get the plastic, the, the metal paddles and I put them together and put the gel on them and they rub them together and they go clear and they do that.

Well, nowadays, it’s. It’s a sticker they put over the heart and on the side. And it’s, it’s a machine they push a button on. So they go over there, they put them on. I hear him say that. And he, like the medical drama, he literally raises off the table. Like his body goes and does that. Now, I have watched these oxygen monitors for years.

And so as they do that, I watched it and I can, I can see his oxygen rate and his breathing rate and his pulse and all that before they do it. And right after they do it, it literally goes. Boop and goes right back to what it was doing and just the minimal things on there. And so at that point in my brain, I go, he’s not coming back.

Now, mind you, at that point, they still do CPR and, uh, and shock him four more times in the next 45 minutes. So they do this for a continuous hour to try to save him. And so they finally go through everything and the yard head doc comes to me and goes. You know, I’m sorry to tell you and she pronounces him and I look at her and go, I said, you know, I was delayed 20 minutes.

I was delayed 20 minutes. I was, I was focused. I was fixated on it. She goes. She goes, sir, you could have been delayed an hour or longer and the end result would have probably been the same result. And I said, I said, I’m at a loss of what this is. I said, can you tell me what this is? I said, because in all the things I’ve done, I don’t recognize it.

And she goes, she said, from what I can tell, she said, it looks like sepsis. She said, it looks like you got an infection somewhere. And she goes, unfortunately in the hospital, if we don’t catch it fast enough, she said the fatality rate is like 95%. She said it’s ridiculously high. And she goes, she goes, so apparently what happened was, was he got sepsis somewhere, it got into his bloodstream and it went downhill from there.

So on the certificate, it says cardiac arrest due to sepsis and sepsis is what it, however, based on what I learned, heard in there as they were doing it. And what I felt that day, I will go to my grave saying, I believe it was gastro aneurytis. And I never caught it because when I went back to look on like Mayo clinic.

com and webmd. com, all of them said, if you see these symptoms go to the ER immediately, apparently at some point that happened and I never caught it. And it just went too far. So that’s kind of how that day went. Um, you know, she pronounced them. I understandably went over and had a minute to myself. And then I came back to the care people that were there that were trying to console me and tell me what the next steps were.

And I’ll never forget it. She, she comes over to me and I said, this is going to sound harsh. I said, but I don’t mean for it to be, but as a special needs parent, as a man, I have to compartmentalize right now. And I need to know answers. And she goes, okay, what do you need to know? I said, what happens from this point?

Are you going to take him to the morgue? If you take him to the morgue, what’s the coroner going to do? Is he going to do an autopsy? If he does, what’s he going to look for? And how long is that going to take? If he doesn’t do an autopsy, what’s his justification for not doing an autopsy? Once you’re done with all that and everything’s complete, who do I need to contact to get, uh, the funeral home to come up and get him and bring him home.

And I listed like nine things. And she did. She literally took a step back and she goes, well, I’m gonna go talk to the coroner and I’ll see what he says. Well, about 10 minutes later, she comes back and she goes coroners decide. He’s not going to do an autopsy. And I didn’t mean to in the moment, but I go, why, why is he not going to do an autopsy?

I want to know your protocol as to why he would or would not do an autopsy on my son. And she goes, and she steps back again. And she goes, typically in the children’s hospital, she goes, the four reasons why we would do an autopsy is if it was criminally related, drug-related, abuse related, or if your son was perfectly healthy and all of a sudden he died.

Is the four reasons that she said, because your son had such a big medical history, the coroner has decided he’s just going to relay it to something related to his medical issues. And I said, okay, I’m fine with that answer. And so, you know, after that we went into the whole kind of funeral home process and all that kind of stuff.

Wow. Well, even have the presence of mind of all those questions, you know, but I’m, but I’m a lot like that too. Whenever I face something that is beyond what I expected, I get really zoned in on the details and the emotional reaction will come later. It’s yeah, this is, this is crisis mood. What do we do in this moment in time?

And, and as a special needs parent, you’ve had to do that throughout your children’s lives, especially with your son to get him the care that, that, that he had needed during that time. So I don’t, I mean, some, some listening who may not understand that, I think that is a typical process for some personalities that to be able to block it all out and just focus on what.

It is. And, and I would, I would tell people that didn’t understand. Uh, I was always kind of in what I call go mode, even if I was relaxed. I still always had an ear to what was going on. And it’s one of the reasons why I’ve had insomnia issues ever since he was born, because I had a couple of times in his life that I literally in the monitor, heard something as I was asleep, I bolted up, I got him out of bed and I, and I drove like a madman to the hospital in the middle of the night, uh, on a couple of occasions.

And from those points forward, I was always in go mode. It was 24, seven, three 65. It did not matter. So that’s just kind of how I live for. Let’s see. Uh, it basically started right before, uh, uh, in utero. So 16 years. And I mean, I still have insomnia issues. I mean, I, I can’t get away from them.

Do you, have you ever, um, you and your wife, have you ever plugged in any type of respite service?

We, we get asked that all the time. And honestly, it comes down to. I know that I have to expand my circle of trust, and with the fact that my son had so many combined issues and a rare condition that literally nobody in this area or even Atlanta really knew about, I had a really hard time leaving him with someone that didn’t have the knowledge that I did.

Because if something were to go sideways and they didn’t know it as, as I did. You know, I’ve told people several times I wouldn’t have been able to live with myself. And so for the longest time, and even still now with his sister, I’m just like, for whatever reason, I’m meant to be on this journey, even if it, I mean, it’s going, it’s going to be a bleak way to look at it and I’m okay with it.

But if it means I don’t go on vacation or I don’t do some of the things normal people do, because I’m taking care of my son and making sure his quality of life is as good as it can be, as well as his sister, then. That’s my lot in life. I mean, it’s a hard life. I won’t make any bones about it, but that’s just my lot in life.

So you had a really close relationship with your son in the hospital. You had that focus moment. When did the grief hit you?

Um, well, when people ask me about it, there’ve been a lot of tough moments, but the absolute toughest moment I had was Well, after he had been pronounced, I called my, his mother and I’ll never forget the sound of the scream she made when she heard it.

she didn’t see that coming.

None of us did.

Yeah. And

she was working for, she was working from home. And so when I told her and she calmed down for a second, I said, cause her parents live close to us. I said, you don’t need to drive up your call. Your parents have them drive. You tell them what’s going on.

The absolute hardest thing I’ve ever had to do is when we decided to go home, I had to get his empty wheelchair. I had to pick up all of his cutoff clothes, put them on his wheelchair and walk through that hospital down to the, uh, to the parking garage. Put all that in the van and drive 60 miles home without him in it.

And so that was difficult. And then even though my daughter has delays, she was at school. He didn’t know any of this had happened. In fact, she always knew that when I took him, I stayed with him. When I came home, he came with me. So when she came home and he was not there, she may not have been able to talk, but I could see it on her face.

She’s just like, where is Zachary? Why is he not home? And so, so we had that and like, you can see behind me where it says Zach, that’s his wheelchair that has remained in that spot since the, since the day he passed away, I have not moved it. And so when. When I brought that chair in here, it’s like a ton of bricks hit me at that point and I just lost it because I’d been far enough removed from kind of the event itself.

Adrenaline had dropped and so I came in here and I just, it, it came flowing out. And so those are probably the three hardest moments I had.

How have you dealt with that grief?

Um, like everybody else in the beginning, it was really raw. It was really. You know, traditionally, as men, our first response is anger.

I mean, that’s just how men are kind of built. Before he passed away, I was going to therapy for some other issues, and I’m a big proponent of therapy. Even if, you know, even And at that point, right before he passed, we had gone through what I felt like was a therapy season. And I was telling my therapist, I said, you know, I think we’ve gone through this.

I think I’m going to hold off for a little while. If something should come up, I’ll reschedule an appointment with you. Okay, fine. And so when this happened, I hadn’t stopped yet and I said, I need to make an appointment as soon as possible. And so we got in there and I explained everything to her and then a couple of sessions and she goes.

Have you ever thought about journaling? Ironically, now I went, Eh, I don’t know if I’m really good at writing. I don’t know if this is what I really want to do. And so that idea sat on my side table for probably six months. I didn’t touch it, didn’t think about it, nothing. And then I began to start writing, like, word documents in letter form to my son.

And I kept it personal. And so from there evolved into, I found my 1st Facebook grief group that was specifically dedicated to parents that had lost special needs children. And so I got in there, got to know the admin really well. In fact, I moderated it for a little while. And so I said, do you mind if I post some of my journal entries?

And she’s just like, no, sure. We, we don’t typically get a whole lot of men doing that. Sure. We’d love to see it. And so I put, it was probably several weeks in because at that point I was writing literally every day. And so it was several weeks in and I posted a long one and I’m, and I prefaced it with, I don’t sugarcoat anything.

This is very raw. It’s very open. It’s very transparent. So if you can’t handle very raw emotions, scroll on by. So I did, and no more than I posted, I got a massive response from a good number of the women that were in there. I got responses like, this is the first time anybody has written something that explains exactly how I feel and that which I’ve never told anybody.

And I said, well, I appreciate us that these words are inspired by my son and just kind of how I’m feeling in the moment. And so I continued to post periodically and every time I would get this massive response. You know, I had one woman said, this speaks to my soul. And I’m just like, well, I appreciate that.

I don’t know if it’s that good, but I appreciate the comments. So, um, you know, I had people say, are you going to write a book? And at that point I didn’t think I had enough material, although I do now. And someone said, well, have you thought about just doing a Facebook page? I said, huh, well, that’s not a bad idea.

And so I started doing that. And I mean, in the beginning I had probably 10 or 12 followers, kind of your standard. And so somewhere in there. I just started reaching out to all these different people that were big names in the grief community. I said, you know, my name is so and so this is my page. I’d like to try to get a following.

This is kind of the niche I’m trying to get into. Do you have any tips or tricks of being online of things I can do to kind of help build my following or what would appeal to the masses? And so I had a lot of them come back. Oh, sure. That’s fine. You know, A, B and C. Here’s what you need to do. If you’re going to, if you’re going to write a book, you need to do this.

If you’re going to do this, you’re going to need to do that. And so they were very instrumental at me building the following I have. And so in seven months, since I’ve started, um, I’m now at almost 900, uh, regular followers. Um, I am, I have representation in 44 U. S. states and 18 countries. Um, I am on all forms of social media.

Um, I have done, including this one, I’ve done five or six podcasts on grief. I’ve done multiple grief groom, uh, grief Zoom sessions. Uh, I’m collaborating on a grief YouTube series with a gentleman. Um, I mean, it’s literally blown up and so honestly, my end game is I’m wanting to do a career change in something in the grief world.

What I don’t know yet. I’m thinking I want to go into public speaking, but I don’t quite know how to get my foot in the door yet with it. Uh, so I’d like to do that. I’m still considering binding all my stuff together and making a book.

I think that’s, that’s a great idea. Yeah.

Uh, just kind of from my perspective kind of thing, I mean, with my ADD brain, there’s about a hundred ideas roaming around in my brain.

You mentioned the Facebook group that you were in, have you found any other support networks that have helped you in your journey?

Yeah. A lot of individuals, um, uh, let’s see, there’s a gentleman by the name of Tony Lynch who’s on Facebook and, uh, I actually found him on LinkedIn. He specifically does grief groups specifically and only for men.

And so, and his comment was, the reason why I only do men is because I’ve learned that when men are in a group setting, if women are a part of it, they won’t open up near as much if it’s just all men. And he said, I do that for a specific reason. And so I said, I can see that I can, I can understand that justification.

So there’s Tony Lynch. There’s, um, uh, there’s another lady on LinkedIn by the name of Portia Booker that I just talked to that I might be collaborating with. There’s authors by the name of Donna Ashbrook that does a lot of poetry, grief related. She’s based out of Scotland. There’s Michelle DeVille, who’s based out of Minnesota.

There’s Liz Newman, who does a lot of poetry. There’s Gary Sturgis, who’s up in the Massachusetts area that does a lot of grief counseling. Um, there’s a ton of people that are kind of in that grief world, not including just the community I’ve met through Facebook groups and zoom sessions and, you know, doing podcasts and that kind of stuff.

So if our listeners want to connect with any of these, can they connect with you and, and get those resources through, through your,

um, Uh, I don’t have them specifically linked on my page, but, um, I can certainly let them know who they are. I mean, I’ve, I’ve used them so much that they’re on the tip of my brain always.

But I’m going to change gears here for a bit. The, um. My listeners that have been with us so far for Season 3 have heard this before, but for anyone new, I kind of thought I’d spell it out. I’m asking each of my guests to give you some advice in kind of a different way. So I’m going to read some open ended statements and I’m going to have Jason repeat them and finish them for us.

It’s just kind of a way to, to pass on some of his wisdom to those that are listening. And, um, so I have four of them for you, Jason. The first one is, a piece of advice I’d offer to other parents of children with rare conditions is.

A piece of advice I would offer to other parents with a child with rare conditions is, I would say to them, dealing with a child with a rare condition would be like someone deciding that they want to start mountain climbing, and the first mountain they want to do is Mount Everest.

Um, I would say from the base of the mountain, it looks very daunting. It looks like it’s impossible. It looks like there’s no way I’m ever gonna get to the top and, you know, plant my flag, so to speak. But the reality is, as you will, even the most expert of climber that can climb that mountain does it one step at a time.

They all do it the same. They do it in chunks. And in fact, if you know anything about people that climb that mountain, they go a certain distance and then they stop at a base camp for that night. So they give themselves a break. So just like in rare needs or common special needs, you can do it for a while and then give yourself a break.

Because as I’ve learned, and many people in the viewing audience knows, it’s not always bad moments. You’re going to have relief moments, so to speak, in this journey. So when you have those, give yourself a break so that when the next time to climb comes, you’re ready for it. Because I’ve had many times in my life where life was just crazy.

And I didn’t know what to do and I was stressed out. And so if you do that, you can then move up to the next base camp and then the next base camp, and then you’ll get to a certain point where there’s no more base camps and you’ve got to just get to the top of the mountain. And so, and at that point you will have learned enough in your journey.

To be able to get up there safely and get back. So I’m as simplistic as it is, I would say this journey is like a mountain. You can, you can overcome it, but it just takes, takes one step at a time.

Nice. I like that. I like the analogy for it. Okay. So next one we have here is the most challenging aspect of being a stay at home dad to children with special needs is

the most challenging aspect of being a stay at home dad for children with special needs is.

Well, to me, as a man, it’s two things. Um, the first thing that I ran across outside of my kids was just the stereotypes I was coming across. Now, it, it wasn’t necessarily a bad thing, but it was more the fact that when I dealt with the female teachers and the female doctors or even male doctors on that end, they, they’re so in tune to be talking to mothers that they did not know how to handle me.

And especially me, who I’m very upfront, I’m very open and honest. I’ve told, I’ve told the doctor to literally to their face. What am I paying you for? I can Google what you know. Why are you stringing me along? That’s how open I am with doctors. And so like teachers and all that initially that didn’t know how to handle the fact that they had to talk about all this information to a father versus a mother.

Maybe they thought I was going to jump down their throat because, you know, a man and how a man reacts when I wasn’t. Now, as long as they were polite about it, I was fine about it. It was when they started giving me information. I didn’t think it was right. I’d go wait a minute. So, you know, dealing with that.

And then the other challenge would be dealing with the, my mental health, dealing with all of their issues and more so on the stress frustration level of it. Just because I went through many times where I’d have nothing and then it would all hit at once and I’d have four or five things all at once hit me and I would have to make, like when my son got really sick, there were times I would have to make split second decisions.

I’m going to take them to the hospital, that kind of thing. So my challenge was just kind of the mental health aspect of it, trying to be as best as I could so that when things came up, I could be as best as I could for them.

Yeah. Right. So the last one may be a little surprising for you, but I wanted to see, see what you would say on this one. One surprising way grief has changed me for the better is.

One surprising way that grief has changed me for the better is. Um, you know, anytime you go through a major life change like this, it changes your perspective and it has certainly changed my perspective, uh, towards just everyday life things that I originally thought were problems are now inconveniences. Things that, things that used to bother me don’t bother me as much anymore.

Now, granted on the other side of that, there are some things just because of dealing with grief, things that never used to frustrate me, frustrate me to no end. So, I mean, there’s a balance there, but you know, when I go out in public and I hear other parents just in passing complain about some things that I think are inconveniences, I sit back and think in my head.

I’m glad I’m no longer that way because that’s really an inconvenience. It’s more the fact that that parent doesn’t want to do it versus just sucking up, sucking it up and doing it. So it’s, it’s just, it’s given me a perspective change is what it’s done.

That’s, that’s what I was thinking when you were saying that it’s, it’s a matter of perspective, you know, and, and I think a lot of life experiences are like that.

We, and as special needs parents, we have to redirect our perspective constantly. It’s, you know, it starts from day one or for you before day one, even when you got that first potential diagnosis, you were already shifting at that point. And, and no matter what. issues our children may face, all of our parents who are listening right now can understand that, that shift in perspective that we have to go through.

Um, you know, we change our, our vision of having our child be a little league player that changes sometimes at day one, sometimes at day six, sometimes at, at 12 years of age, but that may not be the path that our child can take. It was what we thought they might do, but we had to change that mindset because that’s not who our child is.

You know, we’re my, my kids are in their early twenties now, we’re still making those shifts because they’re finding their way. And it’s not my way. It’s not what I had out for them. It’s what their path is. And so, um, so I, I think that that perspective, um, it would make complete sense that given what you’ve gone through.

Like you’re saying those, we, we, we call them for first world problems. A lot of times, you know, they’re really, it’s, it’s, it’s not even an inconvenience. If, if you think of it that way, it’s just what you have to do. Just, just go and do it. But for the next person, it’s the biggest crisis in their life.

They’ve never, somehow they’ve been sheltered and never faced anything bigger than, than not having the appointment go right. Or, or I have to change the, the, the, the schedule for something. I appreciate you sharing all of those answers. I know for years, they were, they were very different. Usually my questions are all kind of the same one with it, but I wanted to touch on a lot of what we had talked about and, um, and I appreciate you, you’re given that, that advice.

I think our listeners will get some benefit from that too. Now I want to. Talk just a minute before we close about your grief page. You, you shared with me earlier that you wanted to share the page with the world. Tell me what kind of support that it offers and how our listeners can find it.

Okay. So just as an evolution through my grief, uh, I decided to start journaling and then I eventually got to the point I wanted to share it and so I decided to make a page called letters to Zachary and the basic premise of premise of it is the idea that in my journaling, I’m writing my son who’s passed away in letter form telling him what I’m going through how I’m feeling. Either because of his passing or, or because he’s not here or what my day is like while dealing with grief, something related to him and grief.

Just to get my emotions out because I’ve learned in my 47 years of life that if I hold it in, it’s going to eat me alive. And so once I can get it out, it may still bother me, but not to the extent it would be if I never got it out at all. And so initially the page was designed because I was getting frustrated in some of the Facebook groups I was coming across.

So few men that were in my position. And so I, I did it for men. However, since then I have opened it up to women, mothers, fathers, parents, siblings, grandparents, whoever’s grieving the loss of a loved one. And. I’ve even kind of recently catered it to women that want to come in the, because I commonly get a comment of, well, my husband or my significant others not opening up, what do I need to do to get them to open up?

And so I’ve opened it up a little more to women to say, if you want those answers, come to me, and I will give you my best. Answers for what I think you need to do to help them feel more comfortable to open up. on a regular basis. So I’m, I’m here to help people in the grieving process, whether brand new or down the road.

I’m here to help spouses and, and, and people around those grieving understand kind of what they’re going through and what they need to do to kind of help them along to, especially if it’s a man or someone that doesn’t really open up what they need to do to kind of break that ice to get them to open up.

Uh, as well as, you know, I, I have on the page, I’ve got, I take other people’s work that’s in there and share it. And I mean, I tag them in it and I kind of write my own commentary to what they’ve written to kind of give my own spin on it. So to have their work there and then mine as a man’s viewpoint spin on what they’ve written.

And so I’ve also created memes for there and, um, you know, I don’t necessarily have it as much on Facebook, but I even do kind of the video TikToks on TikTok that are short kind of videos for similar stuff.

So I was, while you were explaining the page, I was, I was looking at it and I wanted to share a review that I saw and it was just the first one that popped up, um, just so our listeners can get an idea of how it’s already helping others. And this is from, um, from one of your, Your group members, she wrote profound and honest reflections on loss that will make others feel seen and validated in their own grief as well.

This is a beautiful page that truly honors love and the immense impact grief has on our hearts. I think that that’s, it’s a beautiful review, first of all, but certain. That’ll give our listeners an idea of what, what they can expect from what you’re providing there. So how can they find it? We’re, I’ll, I’ll put the link in there, but if they go to Facebook, what are they searching for?

Uh, if you go on Facebook, it’s letters to the word T O to Zachary, Z A C H A R Y is what is on Facebook. Uh, the, right now, the icon is a picture of me and my wife and our kids at a, at a younger age. If they’re looking for that kind of picture on there, although my son was 15 when he passed and he’s far beyond what he looks in that picture, uh, on there.

Uh, so there’s that. And then on Twitter, Instagram, and TikTok, it’s at letters to the number two, Zachary.

Jason, thank you for taking the time to, to share this. This is, it’s not a topic that most people want to talk about. It’s, it is a part of life, unfortunately, that we do run into at different times of our life.

Um, I’m sorry that your family had to go through this at such a young age for, for, for Zachary, but I appreciate what you’re devoting your time to and how much you’re going to help other families as, as they’re facing the same type of situation. And I know a lot of our families who listen are, are more vulnerable to this outcome as well.

And, um, so I, I really appreciate you being open and honest on this and us being able to have this conversation. I, I think it’s very, very helpful for others. I’ve learned a lot. Um, I think having this conversation, having met you, it will make me more sensitive as I meet other families as well. And so I, I think, thank you for giving that to me.

Well, thank you so much for having me. Uh, at the end of the day, uh, my goal is to help as many people as possible.

Tonya Wollum

Tonya

Tonya Wollum is a disability advocate and host of the Water Prairie Chronicles podcast which connects special needs parents with resources to help them navigate parenting a child with a disability. She is the mother of 2 college-age children who have each grown up with a disability. That experience, along with a background in education, led her to create the Water Prairie Chronicles to help share what she has learned with parents of younger children to help them know how to advocate for their children.

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