Brian, Jake Straughter’s dad joins his wife Heather in this episode of A Place of YES. Together, Brian and Heather walk down memory lane in part 1, recounting the life and death of their 4-year-old son, Jake. Jake has been the driving force of both Brian and Heather’s life’s work through Jake’s Help From Heaven, a nonprofit that was created in Jakes’s name, to help families local to the capital region access support for their needs with medical challenges.

Join us for this episode as Heather and Brian touch on some of the happiest and darkest times with their son Jake, and tune in next week for part 2 where they discuss what happened in the aftermath of losing Jake.

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BONUS: Charles Wait, Jr.

BONUS: Charles Wait, Jr.

Charlie Wait, Jr. was born with a rare heart condition and had emergency surgery as a baby. He is now the President of Adirondack Trust Company.

Transcript: *Disclaimer: This is an automated transcript. Please excuse spelling and grammar errors. 

Heather Straughter  0:07  

You were at a meeting in Glens Falls with my dad. I was on the couch, feeding him. I don’t remember, I think I had made dinner for Ethan and I, and I was feeding Jake. And then I just, I don’t even want to get too much into it because it’s so dark and so horrible, but he just something went wrong. Like it was just horrid. But I just remember thinking we had each other we had Ethan, we had support. I mean, it was the first time we talked about some of those things in a decade. Like in a very long time. It was really special to be able to reminisce about the good things and the bad things and just know that we’re on this journey together. Really, it was really special for us. And to really take the time that we took to talk about what is arguably the most important thing in our life, or the most impactful thing in our life was really awesome.

Welcome to a place of yes, a podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show. But first, it’s time for our review of the week. This review comes from Apple podcast. After only listening to the two minute trailer, I’m already hooked. I can’t wait for future episodes of the inspirational podcast to be released. I’m super excited to be getting these reviews. I love it. I hope that people continue to listen, I hope they are hooked. And I hope that it is inspirational. And don’t forget to leave a review on whatever platform you are tuning in from. Hello, welcome to a place of yes, I’m your host, Heather Straughter. A, podcast about how I moved through my darkest hour. All I can say is I dug deep figured out where I was in where I wanted to be. And for me the answer was in a place of Yes. Welcome to the show. I’m super excited today because I am here with my hubby. With Brian. Hi. I, obviously with Jake’s dad, as he’s otherwise known. And together, we started Jake’s help from heaven. As we were thinking about the show, I wanted this to sort of go back all the way back. Let’s get right into it. Let’s talk about when Jake was born. So can you set the stage for that a little bit. We were living in Boston. Ethan was 15 months old. And we brought Jake home. It was exciting,

 

Brian Straughter  2:34  

Jake, you know, another little Taurus in the house. So Jake was you know, he was born May 4 on May seventh, Ethan’s birthday is January 15 to January 3, so it was kind of exciting to have, you know, Jake, you know, close to my birthday. And, you know, it just it was a really exciting time, you know, having you know, two young boys. You know, I you think about all the things that you know, you’re going to do with them as a dad.

 

Heather Straughter  2:57  

Obviously, I know his birthday is May 4 And I know yours is May seventh, but it’s been a long time since I thought about those early days when we really weren’t when it was like the January in May. Yeah, yeah. And then I remember fairly vividly, and feeling like it was so early on. But that Jake was just obsessed with Ethan. I don’t remember as much about what Ethan’s initial reactions is as having a little brother, do you remember those?

 

Brian Straughter  3:20  

When I think back at that time, I I often go back to when Jake was sick. And you know, Ethan being his big brother, even though he was you know, 50 months older than him and, you know, still very little but, you know, he was, you know, always kind of Jake’s protector. And, you know, once Jake got sick, you know, he wanted to be involved. You

 

Heather Straughter  3:40  

know, it’s funny, I always I’ve said this before I’ve said on the podcast, I think and I just say it a lot in life. Like, you know, our life is in chapters, right? The life of our us living in Boston, and the life we have now is 27 different lifetimes ago. You know, so it’s hard sometimes to go back to those days. But in sometimes I don’t know what I actually remember in what is like I see a picture that I create a memory. I can remember Jake wanting to be like Ethan and I remember Jake turned over so like I think you were at work and I was I was like Jake rolled like much earlier than he should have like I want to say was like eight weeks like it was just a baby and rolled over because Ethan was doing whatever nonsense he was doing, you know, as a toddler. And then when we moved even he sat up early. He was feeding himself early. He was cruising early. It just I remember those moments. And whether I remember the moments where I look at the pictures and then create the moments. He was so remarkable, right like it’d be not to take away what happened when he got sick, but just what a baby. Yeah,

Brian Straughter  4:41  we used to we used to say he’s trying to keep up with Ethan you know, and, you know, so what, what kind of connection you know, did they have at that young age were Yes, I mean, you know, so Ethan was doing something and Jake’s Alright, well, guess what I can I’m gonna roll Yeah,

Heather Straughter  4:56  I’m gonna do it. Like you can’t get away from me. No, no.

Brian Straughter  4:58  And again, it was It was exciting to kind of see the two of them, you know, bonding. And

Heather Straughter  5:04  you I remember would roll your eyes at me when I would say this. And I probably should even say this, but I’m gonna say, I never

Brian Straughter  5:09  rolled my eyes at you. What are you talking about?

Heather Straughter  5:13  When we were, you know, they both had the same pediatrician in Boston and subsequently here, but they do those scores, right? When the babies are born, whatever those are called, like, yeah, Jake’s were like, through the roof, if you remember, like, scoring high scoring, like, and I remember just like comparing him as comparing him to eat that. And you were like, you’re not supposed to do that. You shouldn’t do that. And I was like, but look at he’s gonna be, he’s gonna be spectacular, like, what a baby. And he certainly was, and is just in a very different way, I think, than we thought. But it’s so hard for me even all these years later to wrap my head around sort of the story of Jake, because I can remember looking at those scores, I can remember talking to you about those scores, I can remember comparing their records in whatever weird way I would. And it’s hard to know. So I guess that brings us, it brings us to the story of eight months. Although I guess, you know, there’s a lot in those first eight months that we could fill in, we moved from Boston to Saratoga, which

Brian Straughter  6:13  we, you know, said we weren’t going to move until, you know, we wanted to make sure both boys were good, healthy. You know, we you know, they met with a pediatrician, we didn’t want to move, you know, without every everything being perfect. We thought we had

Heather Straughter  6:29  lived so close to Boston Children’s Yeah, we were like, if anything’s wrong, we’d rather be in Boston and Saratoga. And

Brian Straughter  6:35  just, I mean, who would have thought, you know, we would end up where we did, because it just seems crazy that we thought about it prepared for it planned and then said, Oh, this is perfect. It’s the perfect time to move. Now.

Heather Straughter  6:46  There’s there’s a lot of lessons in there, right? Like, you can’t plan anything. You know, there’s there’s a ton there. But so we moved, we moved to Saratoga. And obviously we love to travel now. And it’s something that we have done more of, but we traveled to Argentina with two babies under two. And we didn’t have seats for them. And then actually remember, they had to move people who really then loved us because you couldn’t have two baby, you couldn’t have two lap babies. Under two in the same row. Remember that you went up front with Ethan on your lap. I had Jake on my lap in the last row next to the toilet. It just I mean, that seems like a lifetime ago. It

Brian Straughter  7:24  was a lifetime ago. But you know, we have that picture in our room. You know where Jake, you know, when that’s a good one, you know, like, he’s on my chest. And you know, he’s wearing a hat and the beard and the beard. And you know, it’s kind of crazy. Because he looks so happy. Life was very good, then. Yeah.

Heather Straughter  7:41  So all these things happened in you know, in in his span of life. And then then, and I’ve talked about this on the podcast before, you know, it was Ethan’s second birthday. He was so great that day, we had family your family was in town. Everyone was in town for for Ethan’s second birthday. And then that night, you know, we all went to bed. As great as Jake was in so many things. He was not the best sleepers, great eater a great everything but not the best sleeper. So got up. And it was the Twitch. There was the Twitch I sometimes, you know, not as much now as I used to. But what if i What if I did not go crazy about that twitch? What if I just thought you know, I remember you even kind of thinking like, no, he must just have like a muscle spasm. But there was something about it that we just knew was was not just put him back to bed where

Brian Straughter  8:32  you put your arm on I’m in. You’re like, I’m trying to hold it. You know, hold on, man. It’s not stopping. It’s more it couldn’t make more than just, you know, some muscle. And he

Heather Straughter  8:43  was fine, though. Like I remember those, you know, are you aware, very aware. And I think even like, I think I gave him a bottle. He took that fine. And then you know, we had people staying with us. So we could go to the I was like, I think we need to go to the emergency room. And I remember being like, we can’t call anybody because who am I going to call at two o’clock in the morning and say my son’s arm is twitching and have them not think I’m a lunatic. So we went to the hospital. And that was just a series of misadventures because they didn’t have a pediatric person. And even then, though, I remember they were taking x rays and doing all sorts of things. And he was smiling still, like he was such a flirty little boy and he was flirting with the nurses. But his arm the whole time. When stop, then the whole thing I could pretty dark.

Brian Straughter  9:28  So they said do you want to go back to you know, Saratoga hospital recognizing that it was beyond what they knew. So they said hey, he needs to go to a different medical facility a larger one and you know, you know Albany is not an option. So there’s what Syracuse, New York City and Boston and you know, we came from Boston Boston Children’s Hospital, incredible hospital, you know, for kids. So we said Yeah, well, we’ll go there. You were in the ambulance with with Jake. I’m like driving behind you and the ambulance was kind of just driving at a normal speed. Some Equality, the view or somebody on the ambulance and said, Hey, we’re going to actually hit our lights, because they were concerned in the ambulance. So they said, don’t, you know, try to keep up because, you know, we need to get to a hospital. And this is, you know, they were, you know, had already left Saratoga might have even been outside of New York. So they said, We’re going to divert and go to Springfield don’t keep up. And then we hung up. And I’m like, Do you think I’m not going to speed? You know, they diverted and, you know, then took them to Springfield, that’s where we fail. It kind of

Heather Straughter  10:27  got things went south, they didn’t know what they were doing. And unlike here, trying to be tactful, they did not acknowledge that they didn’t know what to do. You know, mind you, we are at this point, it’s maybe 5am. Like, you know, I mean, our world has turned over in, you know, four hours. But this is a small time period. And we went from, you know, six hours prior being asleep in our bed with two healthy kids to now being in Springfield, Mass at a hospital with a kid who potentially is dying, we don’t know what’s happening. And it’s one of those moments like, if I knew then what I know, now, I would have handled so much of that so differently. But the doctor had this idea to treat him with propofol hopes that it would quiet his brain, figure out what was happening and kind of, I don’t know, almost reset him was kind of the bullshit. They told us. And lo and behold, they did that. And we I don’t remember if we were there a day or two, but it got progressively worse. And I don’t remember if it was URI or a combination of both, but we knew we needed to get him out there.

Brian Straughter  11:30  I mean, I think we were there a few a few days. Is it more and then yeah, I think it was four and or four. Got propofol intoxication. Yep. And then they realized they think they finally acknowledged they didn’t know what they were doing. And you know, that’s when they, you know, med flighted him to children’s, and I got on that helicopter and Saratoga wanted to get a helicopter. So that’s what I was right. Hey, tried.

Heather Straughter  11:54  Do you call my parents? Yeah, my parents were about to travel somewhere. They didn’t get on their flight. My father was like, if we need to get him somewhere fast, I will pay for it. And we figured out the cost to get a helicopter with that was going to happen. And then the helicopter went fly because it was too windy.

Brian Straughter  12:12  It was one Yeah. Yeah.

Heather Straughter  12:13  I mean, those are those moments, right? Like, what why? How is this happening? Like, we were able to get to Boston that night, instead of the layover at Bay State Hospital, things I think would have been different because it wasn’t necessarily just that he was having seizures. It was the way they treated him that subsequently did more damage, I think than the actual and who knows. Who knows we don’t we still don’t know why that seizure happened. We don’t know why. You got to stop asking me because you’re never going to know why I didn’t help. It didn’t none of that. It didn’t know you know, sometimes when you get mad at the world, I get mad at those things. Right. Like, why was it windy? Like, why? I get in the helicopter with Jake, you drive?

Brian Straughter  12:51  I couldn’t keep up with the helicopter.

Heather Straughter  12:53  You made good time. I remember correctly because I don’t feel like I was there that much longer than

Brian Straughter  12:59  I know how to drive. push comes to shove I’ll get there. So

Heather Straughter  13:02  you got there. I got there. I remember that feeling when we were a children’s though of just feeling like okay, like my kids. I don’t know what it means, but he’s gonna be okay. Like, I kind of felt like he was in good hands. He

Brian Straughter  13:14  was there. 117 days and you know, we saw a lot of attendings and residents patients. Yeah. And, you know, I kind of, you know, for me, it was like, okay, yes, he’s gonna be okay. I think back, okay, again, you know, thinking of the dad, you know, so he’s still gonna play Little League. I was thinking, you know, he’ll still be playing baseball, and but then I’m like, what if he’s in the outfield, and then something happens, like, you know, if he got a seizure, but you know, but now he’s gonna be okay. And at one point, you know, I don’t know, the titles, but there was the one of column A resident, and he pulled me aside, you know, and he said, This isn’t good. If this is this is gonna be hard. You know, that was like the first for me, you know, where I said, Okay, you know, we got, we got to really rethink how Jake is, is, and what we need to do for him? Nope, it’s not going to be you know, just normal, it’s going to be there are going to be challenges. You

Heather Straughter  14:08  know, it reminds me and I’m jumping a little bit, we’ll go back. But I remember when we finally got home, you know, so there was all those moments in the hospital, right? Where you’re like, Okay, he’s gonna, he’s gonna be better. And we’re gonna go and then at least on my end, you sort of start to realize this was not going to just, we weren’t just going to walk out of there. We weren’t going back to what we were. But I remember when he started doing like PT, and he was working with Karen and Cynthia. And I can remember being like, okay, great. So when’s he gonna sit up? Remember, like, and I remember you and I would go on a walk even and have these conversations a little bit like, Well, okay, so now he’s in PT five days a week. So that probably means he’ll be like, sitting in like, you know, in like, three to six months, and then maybe he’ll be taking steps by the time he’s two and a half, you know, like, yeah, like kind of still trying to make this a different ending. And I remember it was Karen dake. And she was like, you have to stop asking me that. You’ve got to rephrase these questions. You know, like I, because I was kinda like you’re not giving me an answer. And she’s like, because you’re asking me the wrong questions. I don’t think in that moment, it made sense to me. But subsequently, it made sense to me. I was like, Okay, you’re asking the wrong questions, you’re not getting the answer you want. So you just keep asking, asking again. But the answer that you want is not coming. So you got to figure out, you got to, you got to rewrite the story. And you got to ask these different questions. And kind of like that, right. Like, there was all these moments of when you get a picture in your head, and I’ve talked about this, the picture in my head was always that we were going to be on vacation on a beach and I was going to be walking with my two boys. I mean, you’ve heard me say this many million times, it still makes me cry to think that that’s never happening. Now. Ethan is up to his armpits. You know, I mean, he’s much taller than I am. But I never got that moment, right. And I got all these other great moments and all these other things that happened, but it doesn’t make not getting the moments you picture any easier. So we’re in the hospital. And I think you know, so you touched on it. We were there 117 days, at some point. And I don’t remember when we brought Ethan with us, because Ethan at this point was still he was with my parents. He was, you know, he was in Saratoga. And they would come up and bring him for a day, but bring him back. And then at a certain point, we were like, No, we need our boy with us. And

 

Brian Straughter  16:10  we realized we were going to be there for a bit. You know, it wasn’t going to just be a short stay at the hospital and figure out what’s going on. And they were going to send us back it was yeah, this is gonna be a while so you know, yeah, Ethan came back he we put them in enroll them in a preschool.

Heather Straughter  16:27  Thank God, we picked Boston right and not say our cues or New York because, you know, we had moved from Boston. So we had friends, he went to this preschool. He was a kid for what I dropped him off. I don’t know, it’s 730 or eight in the morning, and then you often would pick them up was the only time he left the hospital was to go pick him up. And at least he was not in the hospital. 24/7 And

Brian Straughter  16:47  one of the my favorite pictures that are you know, him and spunky? You know, at the aquarium. Yeah. You know, I mean, you know, our friends and family stepped up, you know, to help. So

Heather Straughter  16:58  Ethan and I spent most nights at the Holiday Inn, and they did not charge us. So I don’t, I don’t, that time, to me was more like the logistics of how all of that played out was more of a fog to me.

Brian Straughter  17:09  But you know, we didn’t know how long we were going to be in Boston at Boston Children’s. And early on, I guess I just decided I’m like, I’m, I’m not leaving at night. There’s shifts, there’s different shifts, there’s the shift the beast shift the sea shift. And you know, the most challenging one is to see, yeah, and, you know, so I was like, I’m going to just stay here and, you know, try to pay attention, stay awake, and make sure because bad things could happen. And, you know, we were fortunate because, you know, Holiday Inn and Brookline we didn’t know that owner, we didn’t know anybody who worked there. But the owner knew of your dad, and the fact that he knew of your dad, he said, You know, I don’t want to charge you, your family is going through enough. So he gave us a free room for the entire time that we were there. I know, you and Ethan, you know, would go and have food because we wanted to do something at the hotel. I mean, having a hotel in Brookline mass, you know, for four months, I mean, 117 days to not charge is just incredible. And

Heather Straughter  18:11  it was unbelievable and generous of them. Terrible time. And to your point you never left like you’re only leaving the hospital was when you picked up Ethan. And sometimes you guys would go get ice cream or do something. And occasionally,

Brian Straughter  18:25  because you’re like, you know, you still have to do stuff with Ethan. And that was right. You’re right.

Heather Straughter  18:31  I credit Jake for teaching me and making me a better person. I credit Ethan for letting me figure that out. Because in those days, and I’m jumping ahead, but but even starting in these days, like I knew being Jake’s mom and Ethan’s mom are two different things. And I had to be Ethan’s mom, I had to in order to be things mom, I had to fake it till I made it. And that started in the hospital.

Brian Straughter  18:51  And we and we say I mean a lot of Ethan’s compassion right now when you look at him at 19 I mean, he’s a compassionate young man. And it’s unfortunate that he became that by learning it through these hard lessons. Yeah. You know, trying to figure out, you know, what’s not the silver lining, but you know, the lessons that we learned or what we took out of it, you know, I think, you know,

Heather Straughter  19:13  the gifts I kind of think of them as the gifts. He gave us these gifts to be better people. So you would leave sometimes, you know, to because spend time with him. And then but Ethan and I at a certain point, and you know, he was too so some you know, all of the things that two year olds are like he was still so sometimes he’d be great and just want to be there and other times he would throw it for lack of a better word, and I’d like scoop them up and take him back to the hotel, but we’d go back to the hotel and we would we would have some sort of an adventure or something and we would order dinner because sometimes we ordered out but most of the time it was just room service. And one of my favorite Ethan’s stories you know all those months later when we finally were home and I was complaining about having to cook dinner and not doing and he just picked up the phone and was like chicken tenders milk and a glass of wine. Because that was often what we ordered. He’s sort of in his two year old mind believe that you just, you spoke into the phone. And then it arrived. And then in the morning, I would drop him off, he would hang out with friends and had do adventures. And then I would come to the hospital. So I always tried to be at the hospital before morning rounds.

Brian Straughter  20:17  Yeah, no, they do rounds. And we try to, you know, participate in those conversations. And it was always hard when, you know, as different people, you know, would take over for a period of time, because you’re always then trying to educate them as to what’s going on with Jake, because everybody came with a fresh idea. And, you know, while fresh ideas are often good, it was hard, you know, when it was a fresh idea, maybe at each shift, you know, it hasn’t changed much from A to B, and

Heather Straughter  20:45  sometimes I think I would drive you crazy and even after he was out of the hospital, but I would lock in Julie Johnson always calls me Dr. strada, right, because I feel like I can do all the research and you know, I know things. But I would sometimes be like, No, we’ve already done that, like read the file, like I just had, and I felt like I had to be and I still sometimes feel this way about some of our Jake’s families and our kids. And I have to settle myself down because I become so vigilant about remembering details that other people that you that board members that other people don’t. But I think from those days of just not true, like after what happened in Baystate, realizing that I can’t trust anybody to take care of my kid, but myself that I mean, yes, they were the greatest doctors, and they obviously know a hell of a lot more than I do. But if they didn’t read the file enough, they might I’d be like, No, last time you gave him Depakote, he reacted like this, do not give that again, you know, and I just always felt like, if I wasn’t there, something was gonna go so wrong.

Brian Straughter  21:43  I mean, very true. I mean, we had our notebooks and, and I think even they appreciated it, because it was it was helpful, you know, we were coming Shadid others. We were trying to do it, you know, in the best interest. Nobody wanted to do anything bad or, or hurt him. So

Heather Straughter  22:01  117 days were there. So he turned one, he turned one in the little party, we had those great nurses, they made the blankets and I bought cupcakes and things for everybody and banners. And that had that said like, Yay, to be something. And then I do think something sort of shifted right? Like it was just time to leave like we and sort of what we were saying earlier, we were not going to leave with a fixed kid, we weren’t even going to leave with a very healthy kid. But it reached a point that we could have stayed there for ever. At a certain point, we just had to go home.

Brian Straughter  22:36  And I remember, I don’t know if it was Dr. Yom and who said it. But he was, you know, they said you want to get out of the hospital, there’s germs in hospitals, it was so interesting. We took them home. But then every two weeks or so, we were right back on the road, you know, just going to have these follow up visits because they were still trying to figure out what was going on. They were trying to figure out the appropriate medication he should have. So our life just shifted from being in the hospital every day to going back from Saratoga to Boston every two weeks. And

Heather Straughter  23:05  in the beginning. I remember when you bring home a baby, right? Like when we brought home Ethan or even when we brought home, Jake, when you bring home a healthy baby, right? You’re just like, Okay, I’m in charge of this human life. Like i No one told us what to do. But all of a sudden, you come home with a baby and you’re like, I gotta feet like, you know, it’s all those stuff. And then I just remember this pit in my stomach, right? Because as parents, most parents figure out what to do. And then all of a sudden, we’re just, I just remember those days were so scary. And sometimes I remember we would we’d all sleep together on the pullout couch.

Brian Straughter  23:34  Do you remember I do even when I forgotten about Yeah,

Heather Straughter  23:37  it was the like, worst night’s thing you could ever imagine. We had this pullout couch. You know, it was a weird world for Ethan to he’s now back home. He was used to living with mom in a hotel like he was used to his normal was weird. Now we’re trying to have a normal normal, but it’s still weird. And sometimes it just was scary. Like, you know, he didn’t want to leave Jayco low, like we didn’t know what to do. Right. So some nights, we would just open that couch. And we would all like pile in.

Brian Straughter  24:01  No. And Jake had his feeding tube that, you know, when he went up his nose with a feeding tube. Yeah. And you know, so we had to be careful, because you didn’t want to pull that out which which happened. So you would have to get replaced. And I still remember the day when, you know, I took the feeding tube out and Ethan was there. Yeah, yeah, Ethan was very involved in the care of Jake. After leaving the

Heather Straughter  24:26  hospital, they finally cleared him to like, get all his meals and calories by mouth. You know, I think back to that sometimes because I remember to both of us and to me, specifically, I think if I can’t feed my kid, I don’t know what I can do for him. Right? Like I mean, and I think the mother part like I nurse my kids like it’s just it’s part of what being a mom meant to me for whatever reason at that time and when he was being fed, you know, through a tube like it just nothing against that like but it just for me, I was like I have lost so much of what I know being a mother is and if I can just feed him If I can make his food if I can keep him healthy, I’m doing something

Brian Straughter  25:05  used to talk about that. I don’t know if he I don’t know if you know that but you definitely just the

Heather Straughter  25:10  only thing I could do, right like and I could I knew then like I could everything you’d be pureed but he, I could feed them avocados, I could, you know, yeah, I could puree anything. I just, you know, I mean, like, we just made it. And then he eventually went on keto to control the seizures, but even that, like, I’d make him like the Keto cheesecake, it was so important to me. And then I remember at the end, you know, sometimes it was hard for him. You know, I always wondered at what point was I being selfish and not? I don’t know that we ever talked about this a ton. But there were times at the end. Not obviously, we didn’t know it was the end. Like we didn’t know that he was going to die. But I remember being like, Am I making him work too hard? Should we just talk about getting like a, you know, a feeding tube and just take that pressure off of him? Because it got to the point where you had to feed him so delicately, sometimes, you know, and we need massage I had rotating about like to make him and then if you didn’t do it, right, he throw up. And then if he threw up, he sometimes threw up his meds. And then there was, you know, it was just so hard. One of the things I always thought about was like, did I was the feeding selfish? Was it more for me than for him? He

Brian Straughter  26:12  was a baby. I mean, and, you know, his mom was feeding him. I mean, you know, I still feel that there were, you know, opportunities where Jake was aware of some things. And, you know, so he’s aware, he’s aware that my mom’s feeding me. And so I think that I think that was important.

Heather Straughter  26:28  I think we tried to give him the opportunity just to be a kid. I think feeding him represented a lot of that, you know, because there wasn’t, you know, to your point, you’re not taking him to a little league, we’re not taking him on bike rides, we’re not, you know, some of that stuff wasn’t happening. So I feel

Brian Straughter  26:42  like, embrace this stuff.

Heather Straughter  26:46  So let’s jump a little bit. I tell people sometimes because you know, people always make comments about how we travel a lot. Now, I know you guys are always doing something, blah, blah, blah. It is my belief that, at least for me, and I think for us, you know, there was a stretch of time where we could not do that, you know, and I don’t even say that, like, Oh, poor us. We couldn’t travel. It was not even a thought process, right? Like it was our job is taken care of Jake. And they didn’t say we couldn’t put him on a plane. But he also sometimes had fluid on the brain like it was never didn’t seem like a great, it didn’t seem like a risk reward thing additionally make it made sense. So we pretty much limited anything we did to roughly three hours we really like our world was we could drive to Boston, we could drive to New York City, we could drive to Lake Placid and we could drive to Montreal. Yep, I was gonna say Montreal. Yeah, that was what we did. And that was more than enough those trips, I think, to our family became important, because it broke us of our routine, but it still provided a state like every you know, we were

Brian Straughter  27:42  safe, we definitely didn’t do any traveling and in the fact that we also had to go back to the hospital so often, you know, kind of didn’t, you know, lend itself to traveling. So, you know, sometimes we would end up in Boston, you know, for a doctor’s visit. But then that’s when we oh, well Plum Island. And it was kind of nice, because then we started creating family memories of this is what we do. This is what we do, you know, with our family of four. And then so you know, the following year, and well, this now, where are we gonna go this summer from Ireland? And if people want to see us guess what? They can come to Plum Island. Yeah, for us, it was important to make sure that our family network, you know, it was together. And now when people say you travel, I mean, you know, I think we’ve gotten to the point where I don’t need to buy you something you buy me something. I’d rather have a memory or memories and our travel is the most exciting thing.

Heather Straughter  28:32  And I still less so now. But still, when we first started doing something like I remember right after Jake passed, he passed in December that March we took Ethan to Disney because I had always been thinking about how am I going to get my boys to Disney. Just because I grew up a Disney kid. I wanted to go to Disney with Ethan. I think, you know, we talked about okay, like how you know it’s going to take us a week or so. But we’ll drive to Florida. We had had some of those initial conversations. And then it happened and Jake passed. And I was that was our first trip in that trip. I remember being like, well, it’s a weird way but but Jake is kind of with us now. Right? He travels with us. And even all these years later, I still sometimes like I think about it sort of where we are I’m like oh hey, buddy, you know, like, because we weren’t gonna take him

Brian Straughter  29:15  and you’re like Ethan would say, Well, what Jake’s right there.

Heather Straughter  29:20  I haven’t had that conversation with him as a young adult yet but I look forward to it. He’s has not hesitant but he is not overly talkative about Jake yet like he certainly brings it up I think that he I love that he has talked I don’t know to what degree but with Leah like I love that he has someone that knows about Jake because I think for a little bit. He just you know part of being a kid is you don’t necessarily want to be different and having a kid who passed away and having parents who run a foundation and are public about it is makes you different and sometimes he just doesn’t want to be different. I loved that when he would do that. Right like right after Jake passed and sometimes I remember being like putting him to bed and he would say his prayers, members prayers and He had his little like routine of everything he would say, I’d say something about Jake. And he’d be like, he’s right there. I’d be like, where? And he’d be like, over there. You don’t say, like, Oh, hey, buddy, like, we travel and he’d be like, now he’s over there.

Brian Straughter  30:13  You know, the things that you know, kids see in belief. And for me, you embarrassed to hold on to

Heather Straughter  30:20  it, like kids really do see it? Like, if they’re open, they’re open to it, because they don’t know that other people think it’s weird, right? But like, we’re conditioned to not be that way. But you know,

Brian Straughter  30:30  definitely not say it that way or say it. Yeah.

Heather Straughter  30:34  But like when you’re a kid, you don’t know that other people think it’s weird. So he was very comfortable being like, oh, no, check, still. Check still in this room. People often think that we were ready for him passing some people think because he was sick that you just assume it. You know, and I don’t think there’s anything further from the truth. Yes, we knew that he was not healthy. But we had kept him alive. He lived a pretty good life. Like, you know, yes, it was not the life we thought we were having or the life we thought he was going to have. So

Brian Straughter  31:05  we take street walks with the art district, you know, when they would do stuff on Beacon. I mean, it was Yeah, we had our life with Jake. And I

Heather Straughter  31:14  think he liked it. You know, I mean, he had his routine. And some days were better than others. But he worked hard it. You know, we had Xavier coming to the house gonna say Yeah, put them on that fire truck. You know, I mean, we just had such a great team, Cynthia, Karen, like just great people. I do always get a little annoyed when people make the assumption that we knew he was going to pass because we had even talked about, you know, if i What kind of car was I going to drive? Because if I was going to have to get a van, and I was, you know, I’m a little vain. So I was like, Oh, they’re so ugly. I don’t want a handicap van. But I wrap my head around that I probably wouldn’t need to. We talked about when he got too heavy. If we needed to get an elevator put in the house. Like we talked about life.

Brian Straughter  31:54  Yeah, for us. For us. It was not a question of, oh, Jake’s not going to be with us. It was always, you know, so what do we need to prepare for? Because we assumed he was going to be with us for a very long time.

Heather Straughter  32:05  And sometimes it was even the concern was, what about when we get old? The concern wasn’t necessarily that he was going to pass away before us. I’ve been looking for pictures. And I’ve been sort of in this little bit of a rabbit hole of like doing things and I yesterday spent a good portion of time in my head thinking about the months right, so I found these pictures of the Halloween and you probably without me saying it. I don’t know that you’d remember it was his last Halloween but it was that Halloween when he was the vampire and my mom did the face makeup and Ethan was running around with us. So

Brian Straughter  32:35  I have a lot of pictures as well in case you’re looking for some I was looking through,

Heather Straughter  32:39  you know, those days leading up and then I could remember when the days were hard, right and it wasn’t so much. You know, the seizures were under control. We had taken him off some of his meds so he was a lot more alert. And I remember we were so happy because he was he was more participatory in his own life. He cried member I we were standing we were outside ones and he like cried and we were like, felt like crazy parents because we’re like, he’s

Brian Straughter  33:01  he’s having an emotion yelling something.

Heather Straughter  33:05  Like he wasn’t drugged, like I was like, He’s pissed off but I’d rather be pissed off than just the medicine being so high. So we were kind of in this great space like he was doing well on his therapies. But then in the middle of the night he rolled over this still can bring me right to like where I want to throw up, but his bones were so fragile from all the meds and from whatever genetic issue he had that he broke his femur just in bed. I mean, all of a sudden he’s screaming bloody murder, we realized something was going on with Jake because he was screaming and crying and very atypical. I think you took him to Albany Med and they set his leg they said you know we need to get him casted. And we were gonna take him to his orthopedist. So we got him said got him comfortable drove to Boston, I’m calling Dr. Greg cow. He’s like, you have to go in through the ER, I will get you. And meanwhile, he’s Chief of Staff of pediatric orthopedics. He finishes his day. And then he came and casted him himself. I think of the people that we surrounded Jake with and we surrounded ourselves with and I just think of how amazing that was that happened. We brought him home. And because I’m dramatic, I sometimes think that was like the beginning of the end, right? Because Jake was so much more aware of those last few months. But I also think with that awareness, I used to say I remember talking to Heath Eames about it being like, I almost feel like he’s depressed because I think we gave him awareness. And I think he realized Life was hard. You know, we brought him home. He was comfortable. We had that those Christmas pictures with Ethan and Serena. Like he was very participatory in those days. But then you were at a meeting in Glens Falls with my dad. I was on the couch, feeding him. Ethan, I think I think I don’t remember I think I had made dinner for Ethan and I and I was feeding Jake. And then I just, I don’t even want to get too much into it because it’s so dark and so horrible, but he just something went wrong. He threw up a little bit, but it was not there. Like it was just I mean, I’ve said it to you before I was like, oh my god, I think it’s death. Like it was just horrid. And I screamed at Ethan to call 911, which he did. And I mean five years old. And then everyone showed up, then the ambulance, the neighbors, everybody. And then we were off. You know, I remember they wouldn’t let me get in the ambulance. I had a ride in the police car, and I was kind of like, what the, but then we got to the hospital. And Todd was there. So Ethan’s, at the time very good friend’s father was the ER, doctor. And he was fantastic. He was like, let her in here. Get her in here. And I think he you know, he fought hard. You and my dad got there. I don’t know where my mom was.

Brian Straughter  35:47  I believe I believe your mom was there. But I believe Todd. I mean, they were waiting for us to get there. Before they pronounced that Jacob passed. Well, I

Heather Straughter  35:58  knew because well, then they he said, Are you Catholic? And I said, Yes. Isn’t it the priest came, which you’re not Catholic, but when you’re Catholic, when the priest comes, it’s not. You’re not getting out of that one. So that was certainly a heavy episode to record. And I imagined to listen to as well. Well, we talked about Jake all the time, we don’t talk about really the story of Jake, as I call it. And that was, I think, really cathartic for us to be able to go back to our life as a family of four and really talk about all the ups and downs. And for me, it was really so incredible to listen to him talk about the things he lost to because I think a lot about the things that I lost, but to realize he never got to take Jake to Little League. It’s my story of never walking in the sand with a boy in each hand. I really enjoyed the conversation with him, even though it was about the hardest thing in our life. Next week, we are going to explore more of the story of Jake and how it affected our relationship. You know, they say that a lot of relationships don’t do well with this kind of loss. And for us, we really have found that a Jewess together so you’ll be hearing more about that. And you’ll be hearing about how we turned really our grief into good and how Jake’s health from heaven came to be a thing and and you’ll learn more about our story and why we do the things we do. I hope you’ll come back and listen to it. The episode is going to pick back up with us together at the hospital waiting to hear from the doctors.