Navigating the Complexities of Grief: How One Mother’s Grief Birthed a Supportive Community with, Heather Straughter.

[00:00:00] Hello and welcome to the show. This is Once Upon A Gene and I'm your host Effie Parks. Thank you so much for finding the time to tune in to the show. It means so much to me to have you here. And if you haven't yet, I would really appreciate it if you could head over to Apple Podcasts and leave a rating and review. It really helps people decide if they want to listen to the show over another one. Also, you can share this show or an episode that really spoke to you or a topic that you know someone that you love needs. I would really appreciate any of that service from me.

[00:00:30] So, today's episode, I'm so excited about it. Buckle up. It's about grief, but it's not your typical grief talk. Obviously, no platitudes, of course. No time heals all wounds nonsense. Just a lot of raw, messy, sometimes darkly funny truth about what it actually feels like to live with loss. My guest today is someone who I adore so much and I've fallen in love with her since the moment I met her. She's the

[00:01:00] powerhouse behind a podcast called A Place of Yes and the founder of Jake's Help from Heaven. She lost her son Jake when he was just four years old. And for the last 13 years, she has been figuring out how to exist in a world that kept spinning, even when hers stopped.

[00:01:15] So, we're talking about the stuff that doesn't make it into sympathy cards and the contradictions and the unexpected moments and the parts of grief that are ugly and infuriating and sometimes very weirdly hilarious. We're going to go there because grief doesn't fit in a box and neither do we. I tried to think of some questions for her that were just more unusual than the questions I usually hear getting asked about grief.

[00:01:45] So, hopefully, I got something out of her that's going to resonate with you and mean something to you. I know for sure that it will. Okay. So, please enjoy my conversation with Heather Strattner. Hello, Heather. Welcome to the podcast. Hi, Effie. Thank you for having me here. It is my ultimate pleasure and congratulations on being my first video guest. Don't know if I'll end up using any video, but if I do, I'm happy it's you. Thank you. I wish I did my hair a little better.

[00:02:14] Your hair looks awesome. Last time I saw you, you were a blonde, so now you're a fiery redhead. It looks awesome on you. Ironically, it's my natural color. Really? Yes. I was like born a redhead, a fiery one, and then I started screwing around with my hair and then I've been a blonde for like 16, 17 years and all of a sudden I was like, I think it's time to go back. Oh my gosh. So, it's like I'm a fake natural redhead because I didn't want to cut it and then let it grow out and do all that. So, we tried to recreate it.

[00:02:43] I have so many things to say about you being a redhead and meeting a hairstylist, but I'll save that for a private conversation. I do. Because we have so much podcasting content to get to today and I'm just so happy to have you on my show. I just love you so much and I have not even known you for very long and I think so many people can understand that about the people that we meet along the way. So, I'm excited for my audience to meet you and to learn about you.

[00:03:09] I'm definitely going to ask you a lot of inappropriate and personal and messy questions about grief. I love them. So, sorry I didn't give you any warning for that. No, I'm ready. But I think that you have a lot of wisdom to share and I'm looking forward to it. So, please introduce yourself. Let us know, Heather, who you are and what you're doing and about Jake and about your podcast. So, my name is Heather Strotter. I live in Saratoga Springs, New York. And about 15 years ago, my son Jake died.

[00:03:38] And that sort of, you know, when you look at your life, right? Like that is this crazy moment. And it was a moment for me where, and I'll tell a little bit more of the story leading up to that in a minute. But like for me, it became this very clear like fork in the road of where I either had, like because what I wanted to do was like crawl in bed and never get up again. But I knew I had to do something different.

[00:04:02] And the only way that I could do something different and be a good mom to my other son, Ethan, and to do all the things that I kind of still wanted to do with my life was to figure out how to be, I hate saying of service, but sort of how to remain Jake's mom even without him here. And that was to surround myself and to support families that were like mine and that look like mine.

[00:04:26] And that I feel like once you have a child who's really sick and has those rare disabilities and you're the only single one, you learn so much. I want it to be for people what I didn't really feel like I had when Jake was alive. So to backtrack that, Jake was born healthy. He was born 15 months after my son, Ethan. For the first eight months, all he ever wanted to do was keep up with his older brother.

[00:04:55] Like he crawled early. He turned over early. Like they looked alike. Honestly, when I look at baby pictures of them, I have to kind of figure out the date because they just look so much alike. And then at eight months out of nowhere, in the middle of the night, he woke up and he was having a seizure. And I didn't even know it was a seizure because in my mind at that point, I had absolutely, you know, I think I dealt with ear infections. I dealt with strep throat. Like I didn't know this world at all.

[00:05:25] And to me, a seizure looked like it did on TV. It looked like a grand mal seizure. It looked like, it just didn't look like a hand twitch. But something in that moment made me realize that it was not just like a muscle spasm or something. And we took him to the emergency room. And then it became 117 day stay at the hospital at Boston Children's. We live in New York, so it took us a while to get ourselves to Boston Children's. But we ended up there for 117 days.

[00:05:53] I think many of us, including myself, can identify with not knowing what a seizure can also look like. And that really sucks when you find out later, especially. I'm glad that you listened to your gut and went in right away and had that horrifically long stay. You know, you mentioned just a second ago that you hate to call it of being of service. But I think that it's one of the superpowers that you can get in here, in this world. Because being of service and doing a community service helps both parties.

[00:06:22] And it's making change. So I think you should own that community service for sure. Thank you. I mean, you're right. I feel sometimes when I say things like that, I sound like, ooh, you know, look at me. But it was really the one thing. I remember in the days right after we had buried our son. And even though he was sick and had, you know, he was never diagnosed. So we never had a diagnosis to hang on to. But he had lost all his function. He was nonverbal, non-mobile.

[00:06:49] I did manage to feed him by mouth, which was like the greatest thing. And I hung on to that. And I was pretty psychotic about it. Like I barely even let my husband feed him sometimes. Because if you fed him wrong, he would throw up. Like there was a real art to it. But even though all of those things, we just didn't see. Like we didn't think he was going to die. Like we just didn't. Whether we didn't face it or it just, we just didn't think it was going to happen. So after it happened, I remember being in the car with Brian and being like, we need to do something.

[00:07:19] Like we need to figure out. Like we need to help people like us. Because this sucks. We did. Well, you've spent, what, 13 years channeling your grief into something meaningful. Do you ever wonder who you'd be if you hadn't? If you hadn't had that moment with your husband in the car? You know, I think I knew deep down. And I'm like a person who lives like, like I love big. I go big. Like I love my friends.

[00:07:45] And, you know, just this past weekend, our oldest and dearest friends were in town. And I still act like I'm a college kid. You know, like I act ridiculous. Like I do everything kind of big. And even when I'm lazy, right? Like I like, I can lay on the couch longer than anyone else. Like everything I did was big streams. But I kind of, I worried about myself. Like I worry that if I did not channel all of the like angst and devastation and all of

[00:08:12] the stuff that I was feeling that I would, I would go so far in the other direction that I wouldn't come back. Like if I didn't get out of bed, if I started drinking or if I started like going down that road, I worried that that's where I would stay. And I knew that's not who I wanted to be in life. And I knew that's not what I wanted my son Ethan to see. So I just kind of almost had to put the blinders on and just like plug forward.

[00:08:38] And then once we started doing the work, it was like a gift because it kept me so busy because I didn't know anything about nonprofit. I didn't know anything about fundraising. I didn't even know, I didn't even know what I didn't know, right? Like I didn't even, I had no idea. So it just kept me so busy. And the other part of my personality is like when I do something, I want to do it really well so that I just, it gave me something to really lock into. And it gave me this opportunity to talk about Jake, which I also, I think, I don't know

[00:09:04] that I knew it super solidly, but I knew it maybe like subconsciously that that was going to be a key component for me. Like to be able to throw myself into being Ethan's mom, but also remain Jake's mom was very important to me. And the foundation has helped me do that. Does it seem like grief has like an expiration date for everyone except like the family grieving? Did you ever feel like at some point people stopped acknowledging Jake? Yes.

[00:09:33] And I feel like I'm still not great with that. Like I still, all these years later, like I actually was, it's kind of one of my 2025 goals. Like when I, like not goals, but like sort of things I want to lean into is I get so mad. Like, so he passed on December 8th and every December 8th, it's almost like I'm super petty and I keep a list of who reaches out and who doesn't. Hold on, I'm putting that in my calendar again. Oh, it's already there. But like a mentalist. Yeah, yeah, yeah.

[00:10:02] Like I'm just, you know, and sometimes it's just like someone sending a heart. Like it's not words. It's not phone calls. It's not, it's just an acknowledgement that he was here. And every year there's just fewer people that do it and it breaks my heart. Like it makes me still sad or mad or all of that. But I do think, I think that there reaches a point with grief where people feel so uncomfortable around you.

[00:10:28] And that's part of when I started the podcast last year, that's what I wanted to talk about because I think they just don't know what to say or how to respond or how to comfort. So they want to just ignore it. But the last thing, person grieving, especially in my opinion, a grieving mom, like imagine if you can ever talk about your kid again, right? Like it's, it's heartbreaking. So you, I want people to acknowledge Jake's existence or if they can't acknowledge him, acknowledge what we're doing in his memory.

[00:10:57] So we're always very like, cheers to Jake or like, we just try to keep him kind of present, I think. Yeah. Obviously that is something. And that's definitely what I expected you to say. But is there anything else about grief that has just not changed or gotten easier with time? You know, sometimes I even think that it's, it's hard to say. Cause like there's times when I'm like, oh, I'm good at this now, right?

[00:11:23] Like I talk about it all the time on a podcast, you know, people come to me for advice on grief. Like I'm, I'm great at it. But the fact of the matter is there could be a day and I, and you don't know when that day is right. Like, I don't know if it's going to wake up tomorrow or if it's going to be at the grocery store, you know, Saturday. Like it still punches you in the gut. And that I think is the hardest piece is like, you never know. And, you know, back to your, your question before about like an expiration date and do

[00:11:53] people, you know, people sort of think you should like move on or have it's, it's just, it's forever. And I know that for me personally, but I've seen other people as well. And I see like, even recently, like this past December, my father-in-law passed away. So my husband in the last few years lost his mother and his father, even though, you know, they were in their late eighties. They, you know, they lived a long life. Like it's still, it still sucks. It doesn't matter who you're grieving. It doesn't matter how long it's been.

[00:12:22] Like it still can take your breath away. And I think that's the thing that unless you're in it, people don't understand. Right. Oh, so this was, this was kind of interesting. There was, I had a really rough fall and I was kind of, I couldn't figure out what my problem was. Then I realized like, it took me a while to put it together, but I realized that so many people, Jake would have been a senior. And all of the kids who would have been like friends who had kids the same age as Jake, who like would have been there, we're posting their senior pictures.

[00:12:51] And it sent me, it sent me pretty dark. Cause I was like, can I swear? Yeah. Yeah. I was like, like, fuck. Like he's doesn't, he never will have a senior picture. And he should, like he should be here. And granted, he would be probably at, he wouldn't have been at the high school like Ethan. It would not have been the same kind of thing, but God damn it. He would have had a senior picture and he doesn't get one. And it just, it sent me, it got me dark for a little while. So it's like, there's always those things and you never quite know.

[00:13:19] If you had told me that that would have been a trigger, I never would have thought so. I'd be like, no, of course not. I know he's not, you know, like it doesn't even make sense, but it did. It sent me like off the deep end. Yeah. I mean, I can completely understand and, and like know from my own experience now that that is something that would probably trigger me. Maybe it would depend on the day and how much sleep I got. Is there anything that grief like ambushed you on where you didn't expect it?

[00:13:46] Like that wouldn't have been kind of one of those milestone things where you might expect it. But has grief ever ambushed you in something or someplace that never should have been invited to? I would say yes. You know, and I'm trying to think of like a real concrete example, but I, the thing with grief is it can sometimes be like, you might relate to this. So like Jake, when he was in his car seat, he was in one of those big kind of special needs car seats and he didn't have great head control. He just did it. You know? So we had one of those like neck things.

[00:14:16] And sometimes I kind of wish we just bought like the airport pillow because it effectively was the same thing, except we bought this like $300 thing that was like the same thing as the airport pillow. But he had that because if his head fell forward, he could not lift it up on his own. But if it fell a little bit, he could. But half the time that I'd be driving, like with him in the back seat, I'd have like my hand back. So I'd be like driving my hand back to kind of like pop his head back.

[00:14:42] Like if it fell forward, there would be moments after he passed for like a while where like I would, I don't know what would happen, but I would put my hand back and I went and I was like, there's no one there. Like there's no one there. So things like that would happen. Right. Or still like I, we have a guest room in like kind of in the attic of our house that I use for a ton of storage. And just a couple of weeks ago, I was like, you know what? I got to move some of this stuff. Like we got to go through it.

[00:15:12] We got to go through it. In the back of one of the closets was his bath chair. And I was like, well, it can go to the basement, but we're not getting rid of it. Like I just took it from the attic to the basement, but I'm like, we're not getting rid of it yet. I know that in the beginning, especially, but along the journey of having a kid like Ford, sometimes you can get in that space where it feels a little competitive. And I see some families that it really affects, right? If their kid isn't as severe as your kid, then, you know, they kind of push those people away.

[00:15:40] And I wonder, is there sort of like a similar experience like that in the grief world? Do you ever feel competitive in your grief? Like, no, the suffering Olympics, I win. Is there any sort of hierarchy like that that you've run into? And is it just understood? Or is it annoying? I would say for the first 10 years, like I strongly believed in this hierarchy of grief, right? And I was at the top of it. I was like, you're not supposed to bury your kid. Two things would happen.

[00:16:06] I'd get super annoyed if someone was like, I lost my dog, you know, and carry on or like bury their parents because I was like, that's how it's supposed to be. Like internally, I would rage for, like I said, like eight, nine, 10 years, like a long time. And then I also would get, and I'm not, I'm not overly proud of this, but I would get so irritated with people who like addiction or like drug overdoses or any of that. Cause I'd be like, you don't, you don't respect life. How dare you? Like my kid had no choice.

[00:16:36] Like my kid fought every day, you know, with like, he turned once in bed and broke his femur. Like my kid suffered and how dare you treat life so casually? Like I just would get nuts somewhere along the line and somewhere around when I started my podcast, like what it all sort of happened in the same together is I started to have, I don't know if it was turning 50 or like just getting a little compassionate or like,

[00:17:01] I don't know what the moment was, but I started to recognize that I don't believe in a grief hierarchy anymore. I believe that loss just sucks and it hurts. And what you grieve is your relationship. And some people like their pet has been with them for 16 years. And that is their, not their person, but it's their person, you know, like that is their like best friend. And who am I to say that that's less than or whatever, you know what I mean?

[00:17:31] So, but I honestly, for longer than I care to admit, I was very like, I win every grief competition hands down. And now I'm like, Hey, sucks for all of us. So it's really like a recent transition for me. Sounds pretty normal. And I'm glad you, I'm glad you've gained that perspective, but I would like to know what the pettiest thing is that grief made you do. Oh God. I mean, I think I could, that's a whole long list to choose from.

[00:17:57] I mean, I, I think that, I don't know that it's the pettiest, but I would hang on to anger and resentment and I would let it make me kind of a bitch. Right. And again, I almost feel like this is very corny to say, but I turned 50 and I kind of feel like I reevaluated who I wanted to be in life. Like I was kind of like, you're 50, like you're old, like you still act like you're 25, but get your shit together, lady.

[00:18:24] Like, it's like I gave myself a talking to, and I was kind of like, you preach about how people should treat those with disabilities and how everyone should like be kind. And I would preach all these things, but internally I wasn't always kind. I was just like, how dare that person say that to me? Or that person didn't know this, or they forgot Jake's birthday. Or like, they forget, like, I just was always in like a secret fight. Like, do you know what I mean? And so much so that like my friends would be like, oh, don't be in a secret fight with me. Like, cause it was like my thing.

[00:18:53] I just like secret fights. Like I would just harbor it all. And I'm really trying not to, like, I'm really trying to, not that I'm all kumbaya, cause that's not true either. But like, I'm trying to just release it. Just be like the only person I really hurt when I'm hanging onto anger or being bitchy or saying something super nasty because I can, the only person I'm really hurting is myself, right? And the person, but mostly myself. Like, you know what I mean?

[00:19:21] I don't know if that answers it, but I feel like I would sometimes drop those. And I feel like it's like using Jake's death, right? Like, but people would be saying something and I'd be like, well, my kid died. Like I would use it in that sort of like a, like a bullet, you know? And it's just not nice. Yeah. I mean, it does give you some dark humor. And sometimes if you say, well, my kid died in the right setting with the right people, it's kind of funny, right? To break, to break the mood or whatever. You know what I mean? No, I totally agree.

[00:19:50] Yeah. I mean, I think that- It's sometimes with the right people and that's how I know who my people are, right? Exactly. Like people can think it's absurd or inappropriate, but it is one of the ways you can find to cope. Solid way, I think. A super solid way of like that's- I also knew like I would never be that person that just, like I didn't want people to feel sorry for me and I didn't want people, because it's already weird enough, right? Like for so long and still, I feel like it's like the elephant in the room.

[00:20:16] It's like I walk in a room and less so now, but in the beginning, you know, you could almost feel like the tension. Like I needed to be around people who I can be like, hey guys, yeah, I know. My kid's dead. Carry on. I mean, I still feel like that in most settings if I'm out now with like my daughter's friends, parents, you know, like I just don't feel- I feel separate in the room, you know? Yeah. You do, right? Because it's like, and it's sometimes I always questioned.

[00:20:44] I was like, am I making myself separate? Am I like seeing things? But I feel like people just, they make us separate. It's their fault. Yeah. Yeah. It's their fault. Back to before 50. So what is something that grief took from you that has nothing to do with Jake? It took my ability to just see things, trying to think how to articulate like this. When the worst thing happened, right?

[00:21:09] Like my kid died, it took so much because I have to train myself so hard to not think Ethan's going to die or Brian's going to die. Like I feel like it triggered something in my brain where like I sometimes see, not visions, but like I'm like, my brain goes so dark and it does that more often than I think people realize.

[00:21:33] Like I have to actively work every day not to go down a rabbit hole because I think that nobody thinks it can happen to them and it did. And I feel like that happened to me twice, right? Like I feel like when Jake had that first seizure at eight months in the 117 day hospital stay, but then we finally, like we brought him home and we created this like really special life, like this beautiful life. I thought that was my thing. I thought that happening to him was my thing, but it turns out you can have more than one thing because then he died.

[00:22:02] And that is the hardest thing because I don't know how to ever get past that, right? Like I cope with it. I deal with it. I know how to balance it, but I, it, that's like, I hate that for me. Like I hate that. I don't feel like I'm a normal mom to Ethan anymore because I'm just constantly afraid that something bad will happen. Oh my gosh. I totally feel you on that. I think so many people understand that. For you piece. You know, all those videos are, I don't know if you scroll any videos on TikTok or Reels.

[00:22:32] You know, those videos that start out with nobody ever talks about, and then they go on to talk about the thing that literally everyone's always talking about. But if there was a video that was going to say this pertaining to grief, nobody ever talks about this, but is there actually something about grief that truly isn't talked about? You know, I would say that kind of what I was just saying, like, I don't think people, we talk about the sadness not going away. There being no expiration date. We talk about, you know, there's no timeframe.

[00:23:02] There's no stages. Like, I think there's so much more grief talk now, but I don't think there's talk. I don't talk about how much effort it takes me and how much internal work it's done on my own of just, okay, Heather, don't say that out loud to your son or to your husband, because that's grief talking. Like, that's your PTSD over grief talking. That's not what a typical mom or wife would say. Like, it takes up a lot of my headspace and a lot of my time.

[00:23:30] And I don't think anybody, like, if my friends listen to this, I think they'll be shocked by this. I think if Brian listens to this, frankly, he'd be shocked. Like, I don't think anybody recognizes how grief just lives. I feel like now I'm a cliche, like that whole thing, like, don't let them live rent free. Like, grief lives rent free in my head 100% of the time. And yet costs everything. Like, all the time. You know what I mean? Yeah. I'm pretty sure everyone listening who has had something like this happen to them or has

[00:23:59] had adversity that has brought on grief or lost a child or a loved one knows exactly what you mean by that. Being parent or been a part of any of those groups or anything like that and felt like, I don't grieve like that. I must be doing it wrong. Or I don't relate to them at all. Or anything like that. Well, I will tell you right after Jake died, there was a program in our town. And it was more for siblings.

[00:24:26] The school psychologist at his elementary school was like, oh, you guys should do this. It's like for families and it'll help. You know, poor Ethan was five. He called 911. Like, what he experienced was like the same thing for us, right? Like, it was one minute his brother was here. The next minute our house was filled with the firemen and police and EMTs. And like, it was just chaos. And he was five. So I can't even imagine what that was like from his perspective.

[00:24:55] But we went to this program. It was called Wave Riders and it was at the community hospice. And I remember sitting there and I was like, I feel like we went back a handful of times. Like maybe we even did the set time we were supposed to. But we were all so uncomfortable because the majority of people there were so, I don't even know how to say it, but so like they didn't get out of bed. They lost their job. They couldn't move forward.

[00:25:21] And maybe that was part of it for me where I was like, am I not sad enough? Like at first I was like, is that what I'm supposed to do? Is that what I'm supposed to look like? And then I was like, no, I don't want to be anything like that. And that sounds judgy, but I don't mean it judgy. But I just knew for my journey and my path that I wanted to figure out how to move forward and get through it and not forget it and not like not live with it, but not, I didn't want to grieve that way.

[00:25:48] And I think because of that, like I never went into any grief groups or grief therapy or grief, like I just haven't done any of that. I've sort of tried to process it on my own. I will say, you know, through Jake's Help From Heaven, through the organization, by default, the population we work with, like we lose kids all the time. Like this summer, we had a horrible summer. We lost four kids that we work with. And what I do know is that the parents that we work with and the families, they know that

[00:26:17] I have been there and that I have pushed through and that I think it gives them, I don't want to say it gives them hope, but it gives them a very different way to successfully grieve. That sounds really weird. But like to push forward in a way that doesn't have to be, I'm never getting out of bed again. So I do feel like, and the other thing with that is these families who are in our circle

[00:26:42] of Jake's Help From Heaven, I love that I can be there for them. I love that I have walked in their footsteps when there's like the diagnosis and the hospital stays, all of those things that are so isolating for families. Like, and I don't do it for all of our families just because there's too many, but I have some that I, you know, are, that I text all the time about like, hey, how's Milana doing? Hey, is Jude okay? Like, you know, or who will text me and be like, oh my God, you're never going to believe what happened. I just like, we're in the ER, he just had emergency surgery.

[00:27:12] Can I just vent to you? I'm like, absolutely. So I try to sort of model a different way than the way I think sometimes traditionally people think you have to grieve. I love that. Do you think that there are some absurd expectations that people have for others in grief? Like, do you feel like people's eyes or yeah, expectations are on you for whatever reason or have been?

[00:27:38] I think that there are, like in the beginning, God forbid they see you smile or out for drinks or anything like that. Like, I feel there was a ton of judgment with that and maybe it was my own, maybe I was projecting it or something. But I feel like people in society have a very clear way of how they think you should be. And when you're not that, I think it's uncomfortable. You know what I mean? I remember the first time there was an event that I was on a committee for and I had kind of not done anything with it. And this was, I think, in March.

[00:28:09] Jake had passed in December and I was like, you know what? This is a committee I'd worked on for years and years and years. Like, I'm going to go to this event. And meanwhile, I had lost, like, I was this big. Like, I weighed nothing. I had, like, two dirty martinis before we even went. Like, so it was probably not a great look. But people flocked around me. And I remember standing there like a deer in headlights. Like, and I remember one person saw me and came over and helped me. But, like, it was almost like celebrity, right?

[00:28:38] Like, it was weird. Like, there was like, oh, Heather's here. Jake just died. And da, da, da, da. And what should, like, it was like this competitive weirdness. And I couldn't handle it. I was like, this is crazy. But I do. I feel like people have a real conceived notion of what you should be doing. And when you're not doing it, they don't know how to handle it. So it just, it's weird for everybody. Yeah. I can imagine even just from my own experience, like, how complicado that would have been to go to social events after Jake died. And go after that writing to go for it. Yeah.

[00:29:08] I was like, there probably was a couple times where you tried and tried and then swore it off. At least that's what I did for a while. Yeah. Like, I was definitely, like, it was uncomfortable, right? You know, and then there was definitely, there were some friends who were like, no, every Monday night, we're going to have girls tonight because, and I was like, I don't want that either. In many ways, people's intentions were good. But it just, I don't know. Like, it's hard to find a solution for the person. Because I think in the, especially in the beginning, that person doesn't even know what they want. Like, I didn't know. Yeah.

[00:29:38] Yeah. I mean, there's such a disconnect between grief and your life now, right? And like, how are you expected to be this fully functioning, lovely person, but then also hold like this endless loss? I kind of say this with people sometimes, like grief is like a full time job. Yeah. Like it's, it really is. Is there a part of grief that has softened you? And maybe even a part of grief that has turned into something good for you or that you like? Is there a part of grief that you actually like?

[00:30:08] So this is kind of like that two-part story again, right? Like I think in the beginning, I say this now as I look back at when I used to get really angry with people or I harbored a lot of like, my grief is the worst grief and, you know, your grief isn't the same. A lot of that was I didn't deal with it. And now that I have, I love that I can be this person at Jake's Hell from Heaven.

[00:30:35] I love that I have this connection to people, whether I've met them in person or not. Like I love that I can understand. Like I love that you and I have talked twice on podcasts. We live across the country, but I feel super connected to you. Like I feel like rare disease and grief brings that out in people. And I always say this, like I would give a million dollars for Jake back and not to be as like tuned in or compassionate or like all of these like things that I now am because

[00:31:04] of my loss. I'd give anything to just have Jake back and not be as enlightened or whatever. But I do think because of this loss and because of this experience and because of my time as a rare mom and those things, I just, I'm just kinder and nicer. And I feel so deeply, right? Like when I see, when I see someone being shitty to someone who can't fight back, like it makes

[00:31:33] me a total lunatic. I can't anymore. Like, and I don't feel like I have to, like I will go off. Like, cause I just like pick up, like, you know what I mean? Like the bullies of the world and the, and honestly, some of the stuff that's happening right now, right? Like with all these cuts to like 504s and IEPs and, and diversity and, and all of this, like it just, I just want to scream, you know? Like I just, I feel like I feel it all much deeper than I think I was ever capable of feeling.

[00:32:02] And I think that is, that's the grief, right? Like I didn't feel as deeply before it. Yeah. It's one of the gifts and the challenges that is bestowed upon you. Yep. Totally. Do you think that if you could go and talk to your past self, like the moment before everything shattered, do you think that you would? I don't think so because I don't, there's no way to prepare for it. And what, like all, do you know what I mean? Like if, if I went back to like 25 year old Heather and said, this was going to be your journey, I don't know that any good would have come from it. Right?

[00:32:31] Like, I think I needed all of that silly youthful stuff. I needed all the, like, and I always say this, like whether it's with relationships or like any of that, like I try very hard not to live like a life of regret, right? Because you do the best you can with what you got. And sometimes you make mistakes and sometimes you make horrible choices, but like you learn from them and you figure it out. I think I would have just, I'd let it play out exactly like it did and let like the before Heather be naive and innocent.

[00:33:00] I love that answer. And yeah, I mean, I think, I think so much of our past experiences, good or bad is part of our toolbox, right? For, for when everything does go into flames. Yeah. Well, so tell us about the podcast and about, about your organization and obviously you've turned your pain into purpose and you're evolving from it every single day and learning more about yourself and your family. Tell us about it.

[00:33:28] So the organization started right after Jake passed because I knew I needed to do that. And we had no idea because back then the internet, well, the internet was a thing, but like social media wasn't a thing, right? Like their Facebook was relatively new and there wasn't this vehicle to meet people in the way that there is now. I didn't know like that there were families like mine all around my community. So we kind of started where we were like a hundred mile radius of Saratoga Springs people.

[00:33:55] And we kind of, our, our mission was like to help kids like Jake, you know, when insurance doesn't get you what you need to just make things easier. Like we called it like medically necessary, but also medically convenient, right? Because you know that, you know, yes, sometimes things are medically necessary and you need it, but sometimes there's just that really expensive, like, you know, I talked the story about like the, the neck thing, you know, like sometimes it's just something that makes your life better.

[00:34:19] And maybe Medicaid or Medicare gets you a wheelchair, but what you really need is a big comfy stroller with big wheels so that your child can watch their brother play soccer on a field and you need the wheels to be able to get that. So we wanted to like provide families with those things that insurance might not cover, that are outrageously expensive because they have the special needs name on them. And we just wanted to get, make that available for, for families.

[00:34:47] And that, that was pretty like the simple goal of like, we're going to create this and we're going to figure out how to do it and we're going to raise money to do it. And through that, it turned out like I turned out to be a pretty decent fundraiser. Skill didn't know I had, but like, I think when you feel so strongly and it's so passionate, like it's, it was pretty easy to, to talk to our local businesses and some bigger businesses to get us to support our event. So we would have an event every year and it was called a family fun day. And we did it around Jake's birthday.

[00:35:17] And we did it that first year because I knew I needed something to look forward to. And we did it at the bowling alley where we used to take Ethan and Jake, like very simple premise. And it grew into a really big event. And it was like our landmark event. We did it every year. We made enough money so that we could give that money away every year. Like we were very transparent. Our last year we raised 200 grand at it. It was wild. But with that, the bigger it got, the bigger it got, the bigger it got, the more money we were giving away. It's still just me doing it.

[00:35:46] And I just was burning out. Like I just was like, I cannot, I can't do this. And I struggled so much internally because I knew like there's families that count on us year after year after year for help. And we can't just disappear. But I also knew that, you know, Ethan went to college. I just couldn't keep doing this forever at the rate of which we were doing. Like I started this organization to help others, but it became a full-time job with no pay. And it just became kind of a lot. We wanted to stop doing fundraising.

[00:36:16] COVID kind of helped that because all of a sudden people were less, you know, less wanting to go to events with 300 people. So I had this idea that if we did a podcast and shared the stories of the families that we work with, that people would want to hear that. And that there was going to be value in that. I just knew it because I knew that the relationships I had and just these remarkable families that exist all over the world, right?

[00:36:42] Like in every pocket, in every community, there are families like ours doing what we do every single day. And I just feel like there had to be a place to share those stories. And that's where Place of Yes came from. Place of Yes is something we would always say at our board meeting. Like sometimes we'd get board members who'd be like, why are we paying for music therapy or something? And I was like, because we come from a Place of Yes. So that's where the title came from. And it really just became a place.

[00:37:11] Like the first five or six episodes were just, maybe even more, were just Jake's families. Like just families we had worked with. And I was like, let's just tell your stories. Like share your experiences. Talk about what it's like. And some people were more comfortable than others in talking about it, but it kind of built a little bit because we're everywhere, right? Like people want to feel like they're not alone. And I think that sharing these stories and sharing stories of grief and loss, but it's not, you know, there's stories of hope and resiliency.

[00:37:41] And like people sometimes will say, oh, I don't want to listen to your podcast because I don't want to be sad. And I'm like, well, then you've obviously never listened to it because there's laughter and joy and all good things too. Like both things are true. Both things are true. So are the services and things that you provide for people, is it just for like local New Yorkers or does it spread out? So it started a hundred mile radius. And honestly, just last June, as we talked about, well, the sustainability of me, right?

[00:38:08] Because we really were like, what happens when I burn out? Like when I can no longer do this. And we talked about all these other options, like would another organization pick us up? Or do we try to franchise it almost? Or do we hire someone? And I was like, well, we don't hire someone because to have like an executive director at a nonprofit who's doing the stuff that I'm doing, we have to raise all that more money. Like that doesn't make sense. So we tightened up our geographical location.

[00:38:35] We tightened up that just so that we could continue to help those more. You know, like the people that were already helping. I do wish, like there's a pipe dream of mine and I have no idea how it would even happen or where, but there is that little seed in the back of my head that if we could have, you know, like, because communities everywhere need the work that we do.

[00:38:56] And we hear from people all the time that's like, oh my God, I wish you existed in Nevada and Montana and California and Florida, like even further downstate or western New York, like even within the state of New York, right? And I just think our model is so simple. It is, we don't want to make, you know, there's other organizations that it's a 10 page application and you have to give your tax documents and you have to do this and that. I was like, I never want to do that because I know what these moms and dads are already going through. It's a super simple document.

[00:39:25] It has to be signed by a doctor because we have to make sure it's legit or, you know, have a script or like a letter of medical necessity from the therapist or something, but that's it. Like it's a basic application. And if you do the basic things we ask you, we are going to say yes. Yes. And I wish that we could figure out how to pop them all over the country because I think it makes people's lives better, right? And it's not just the individual you're helping. It's like the brothers and the parents.

[00:39:51] And when everybody is, when the parents' lives are a little easier, when the brother or the sister's lives a little easier, the kid is too. Like everybody works better. So we try to kind of do like the whole family approach. Yes, that's so awesome. And may your podcast now that you're on the airwaves really bring out that mission that you have because you never know. It might help you pick that up and expand it. Well, it's interesting. Like I don't talk about it a lot. This is the first time I've sort of put it out there. But that's in a perfect world.

[00:40:18] How great would that be if like there'd be these ways – and I don't even know where to start with that. But like where we could have this model of just – you know, we do like medical reimbursement, right? So you know how expensive it is every time you have to go to a specialist. And if you're not lucky enough to live in the big city, you know, there's – where we are, there's people going to Boston, New York, Philadelphia. And then you're usually getting a hotel. You know what I mean? It's just so – so we cover all that. Like we pay for your gas or your transportation. We give you a hotel stipend, a food stipend.

[00:40:47] Because again, it's like the family. Like when we used to go back and forth to Boston with Jake, it wasn't like we could just go down and back in a day. Like he needed like time and space. And we'd bring Ethan. And then Ethan was like on board. So then we'd go to the aquarium or something because you try to like make something out of it. And we want that for our families too. We want to try to ease that burden. And I always hate saying burden because it feels so negative. But we want to make it easier for them to do everything they want to do.

[00:41:18] Yeah. And really only coming from another person who's been there really understands the simplicity of the task and how important – how that's like the most important piece to actually allow families to accept that help without putting more on their shoulders to burden. I love that. Well, it's even like, you know, when we do the equipment, like we have the equipment delivered to us. And Brian, like Ethan used to do it. But like Brian builds it all because that'd be the other thing, right? Like you'd finally – I remember we'd get this like approved for something for Jake.

[00:41:48] And then when do you have time to then like build it or do it? Or like – like so we just try to make it – we try to take all of that like extra crap away from it and just simplify the process. We will get it in their hands good and ready to go. Yeah. Did I make this up in my head or did you help our mutual friend Daniel DeFabio get that little elevator? Or did I make that up? No, we didn't get the elevator. But we worked with Lucas a ton of times.

[00:42:16] We might have actually reimbursed for some of that. I'm trying to remember. But we got like equipment and medical travel reimbursements. Like that's – it was wild to me because we worked with Lucas a ton and with Daniel. And then I was reading Jesse Fine's book, Breathtaking. And it was talking about Daniel DeFabio. And I was like, well, that's not like, you know, Joe Smith. Like that's not a – I was like, is this the same? So I like emailed him. I was like, is this you? Like it is you, right? And he was like, yes.

[00:42:46] So I was like, well, now you have to be on my podcast. Oh my gosh. That's awesome. I love small worlds. I love that so much. And yeah, shout out to Jesse Fine and her book, Breathtaking. It is a masterpiece. Go read it. He just was back on my show for a second time. We talked about when she was in Guatemala over the holidays and she worked with like a Mayan – worked, I guess it's probably not the word – but like went to a Mayan priestess and connected with Dahlia. Amazing. Oh, I'm definitely going to listen to that episode.

[00:43:16] I want to do that. I was like, I want to do this too. I was like, I'm always scared to do any of this. And I was like, I just want to talk about this. It's like a very niched episode, but I was like, we're just talking about this. I love that so much. That makes me think of Ethan actually. Like I know when Ethan was a little boy, like all children have is this special veil that hasn't lifted. And he used to say that he could see Jake or that Jake was in the room. Yeah, he's right there, mom. Don't cry. Yeah. How is he doing now?

[00:43:42] And in like the most basic way possible, because I know we could never get the depth or the nuances of it. Like how is he doing? And have you noticed that it's turned him toward any sort of compassionate career or something like that? So I think it has made him through his elementary and middle school and high school, like I think through a lot of that period, it has made him truly a more compassionate child. Like I would hear from like other parents, like I remember when there would be like a new

[00:44:11] kid in the class, like he always was the one who would sit with them or like invite him to play football after school or like that kind of thing. I don't know, like maybe he would have been that way anyways, but I do think a lot of it has to do with Jake and just sort of knowing that the world is not kind and you have the choice to be kind. And I think that's a lot of who he is. When he was first semester freshman year at college, I mean, I would say in the first couple of weeks, he called me up and he was like, so, and I'm like, what?

[00:44:41] Like it was that kind of, and he's like, well, I'm wondering if you might like Venmo me for something I just did. And I was kind of like, okay, what are you talking about? He's like, well, I was at Shine, which is like the student center. And he's like, and there was someone talking about autism and he was talking about swim therapy and hippotherapy and all of these different things. And they were raising money. So I made a donation. I couldn't afford hippotherapy like Jake's does, but I made a donation for adaptive swimming. And I was like, that's fantastic, buddy.

[00:45:11] I love that. I was like, how much, what are you talking about? He's like, well, it was $250. I was like, well, you cannot afford that. Yes, I will Venmo you. Your kindness and compassion. And I love, love, love that you did that. But next time you're so moved, 25, 50 bucks max. Like you're good. Yeah, it's okay. It's okay. It's great. But like, I love that about him, right? Like he, I'm sure a bunch of his other friends kept walking and he went and stopped and listened. And like, he's like, the guy was so cool.

[00:45:40] And like, he knows that world. But with that said, I think that it's hard. I think it's really hard for him to know when to tell people he has a brother that passed away. Like, I think he struggled with that. I think it's hard through the podcast. Honestly, I've talked to people who, I've interviewed people about sibling loss and it's made me really question if I did enough for him. If I supported him enough through his loss, right?

[00:46:09] Because all these siblings talk about that the focus is always on are your parents okay? And they have to answer that all the time. And I 100% know that that was his journey. No one asked him, are you okay? Including me probably some of the time. So I think that he does have this weight to him. And I hope that as he is, you know, he's 20 now, which is wild to me that I have a 20 year old. It's wild.

[00:46:38] But, you know, I hope that we together as he's an adult, like we can, I can help him now. Because I don't know that I did a great job along the way before this. Yeah, I think we all worry about that at all times with these darn siblings. You know, I have some so extra special dudes who have lost their siblings. So if you ever want to meet them or listen to some of their stories or connect them with Ethan, please do so. Because I would love to. Yeah.

[00:47:05] They're like my mentors, you know, in just like how to make sure that I don't completely screw Esme up. But they have so much wisdom and just like I'm sure Ethan does, right? And they just walk differently. And they have a different sort of spirit about them in general. Because we need it. And they have so much to add. They have so much to teach everyone. Like they know so much. And we, you know, we needed so much from them, you know? And you need so much from Esme. Like they, and they, they step up to it. It was interesting.

[00:47:34] Ethan's college essay, he wrote about calling 911. And he wrote about, he had this one part that was, you know, when all my friends were going to play ball with their brothers or watch their brothers' games, I was going to PT or OT or I had to be home because the OT was coming to the house. Like, you know, like I did things with him, but it was different. It made me think like it, you know, I mean, like when you're in it, you're just doing the best you can. But I was like, he knew that.

[00:48:02] Like even at four and five, like he knew it was very different. Well, as you probably know, now that you're on social media, even though you're 25, going on 50, there's been a lot of loss recently, definitely more noticeable because a lot of the kids who have, who have died in the last couple months had big followings from families who have just watched their journeys and learned from their journeys and fallen in love with these kids.

[00:48:28] And, you know, people have been grieving globally from, from this stuff. So I guess maybe speak to the families who watch this over and over, who watch their friends' kids die and speak to them and then also speak to those parents who have lost their child. So first I would say to the friends, right? Like whether they're friends that live next door or they're friends that, you know, through these,

[00:48:53] through social media, I cannot say enough about the importance of just reaching out. Like don't be afraid. You know, I talk out of both sides of my mouth sometimes because I say that sometimes people say the wrong thing, but a hundred times I'd rather someone screw up what they're saying, but reach out, right? Because that reaching out tells the person they're not alone and tells the person that their child's life mattered.

[00:49:18] And I think that particularly with our kids who do not often experience the traditional means of success, right? Like they're not the baseball star or they're not the quarterback or they're not the, they're, they're not the things that other people put value on. I always worried that like people just ignored or glanced over. They didn't want to stare. So they looked away, like reach out, like even, and I always, I say it all the time.

[00:49:45] Like, even if it's a heart emoji, like if you don't know what to say, like just send something. And I would say that if it's the person, you know, or if it's the person that you've been following their journey, you know, if you're one of a hundred thousand people following them, it still matters. Like still reach out. What I think would be my most basic of, of like advice, right? Because people would always be like, I don't want to, you know, I didn't want to make you think about it. You're not reminding them their kid died. No, you're just not like, you don't have that kind of power.

[00:50:14] Like they are living with it. They know it. You know, if you can do anything that just gives them a smile or makes them be like, my kid mattered. Then I think that's, that's a huge gift you can give them. And then I would say for the people who are in it, I mean, I always wish, like I say this, I wish that there was just like a do this, do this, do this, you know? And there just isn't, but I think it's feel the feels, right? Like if you want to be mad, be mad. If you want to be sad, be sad, like be whatever it is you need to be.

[00:50:43] But also you have to, you have to think small and big at the same time. Like you have to think like, what do I need to do for myself and for my grief and for my feelings right now, but then also where do I want to be? Like, do I still want to be in the same place in two weeks, in three months, in one year? Like, and I think you have to very cognizantly think about that because otherwise grief is so big, it can just eat you up. And that's kind of like what I talked to earlier, right?

[00:51:09] Like we all have this, whether it is you don't get out of bed or you drink too much or you just live at, like whatever it is, like you have to very consciously keep yourself moving forward. So I think it's that balance of like, you know what, today I need a day of crying in bed, but tomorrow I need to get up and go for a walk. Like, do I mean? Like, I think being very deliberate about that because otherwise I think that's how, how

[00:51:38] some people end up not leaving the house for two years. You know what I mean? I do. I do know exactly what you mean. Amen. Heather, thank you so much. How can people get in touch with you? And obviously I'll have, I'll have a place of yes linked on here. Go subscribe to her podcast. It's so amazing. It's my new favorite podcast. Go check it out. And so I am on all the socials. I, you know, a place of yes podcast has its own page. Heather S. Strotter on Instagram, Jake's Hell from Heaven on Instagram.

[00:52:08] You can always reach out to me via email at heather at jakeshellfromheaven.org. I love to hear from everybody and anybody. And please listen to my show. Awesome. Thank you, Heather. Thanks for being my guest. And I'm so glad I met you. And I'm so just grateful that someone like you exists and you're putting this goodness out into the world. I am always even just really concerned about families. Like I just feel like all these families are my families.

[00:52:37] And when someone loses their kid, I just like to be able to help them go somewhere to whatever planet where someone understands them that day. And you are now in that rare collection. So I appreciate it. I am. No, please send them my way. And ditto. I am so, you know, we talked about this when you were a guest, but I'm just so happy to have met you and to have connected. And I just love, I love how you're out there talking about these things. And I, anything I can do to support and help you and the families you work with and your conferences and any of that, I'm all in.

[00:53:07] I am, I'm here for you. I love it. Awesome. Awesome.