Love, Loss, and Living On: A Mother's Journey, with Heather Straughter

Does your life have a clear before and after? A single moment that changed everything irrevocably?

That's what happened for Heather Straughter.

In this deeply moving episode, Heather shares her journey of love, loss, and finding meaning after her son Jake's unexpected medical crisis and tragic passing. Heather's story begins when Jake was just eight months old and had his first seizure. From that moment, their lives were forever changed as they navigated the challenges of caring for a medically complex child.

Heather takes us through the 117 days they spent in the hospital, the search for a diagnosis, and the profound shift in her identity as a mother. She shares the joys and struggles of parenting a child with special needs, the incredible bond she shared with Jake, and the devastating loss her family experienced when he passed away at just four years old.

Through it all, Heather found strength, purpose, and a new perspective on life. She turned her pain into promise by founding Jake's Help From Heaven, a non-profit organization that has provided more than $1.7 million in grants to families with medically complex children.

Heather's story is a testament to the power of a mother's love, the resilience of the human spirit, and the possibility of finding light in even the darkest of times.

You'll learn:

• Why you should listen to the pit in your stomach
• How it's your right to question doctors and share what's best for your family
• The beauty of focusing on what someone can do, rather than what they can't
• Why the comments that make us mad and make us hate the person who said them can be exactly what we need to hear
• The value in sharing your journey, even -- and maybe especially -- in your darkest times 

Learn more about Heather:
Jake's Help From Heaven
Jake's Help From Heaven IG
Heather on IG
Jake's Help From Heaven FB
Heather on FB

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Music credit: Limitless by Bells

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don't Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable.

I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. 

Welcome back to the show. My guest today, Heather Straughter is an incredible mother, advocate, teacher, and change maker. 

Before we get into her story, I want to give you a heads up that this episode contains some tough emotional topics, as Heather and I discuss the heartbreaking loss of her son Jake. If you're not in a place right now where you can listen to this, go back and check out a past episode instead. 

I don't know Heather personally, but we've had a few conversations now, and I have to say, there are a [00:01:00] lot of details in our stories that overlap.

Heather's life changed dramatically when her son, Jake, was eight months old. One night, out of nowhere, he had a seizure. Heather didn't know it was a seizure at the time, but she did know something wasn't right, and she took Jake to the emergency room. They stayed in the hospital for a week. for 117 days.

Heather and I spoke about the months she spent by Jake's side in the hospital, coming to terms with the way their lives were forever changed by his disabilities, and ultimately, Jake's unexpected death at just four years old. Through it all, Heather shares profound insights on redefining her identity as a mother, finding meaning and purpose through this extended journey, and even how her perspective on faith evolved through her experiences.

Now, Heather runs Jake's Help from Heaven, a nonprofit she founded to help people with medically complicated lives thrive. Since its inception, the foundation has awarded more than 1. 7 million in grants. [00:02:00] Our conversation is a powerful testament to the fierce love parents have for their children. And I know Heather's wisdom will resonate whether or not you have personal experience with these types of challenges.

Heather's story provides a beautiful perspective on love, loss, and living on. It is now my privilege to introduce you to Heather Straughter. 

Heather Straughter: Welcome, Heather. I'm so happy to have you here today. I am so honored to be here and I'm so excited to talk with you. 

Jessica Fein: Let's start off by talking about your before and after, because like so many of our listeners, your life had a clear before and after.

Heather Straughter: My before was, I hate to say, typical, but just very typical. I lived in Saratoga Springs, New York with my husband and my two sons, Ethan and Jake, who were 15 months apart. Ethan is my oldest, Jake was my youngest, and he wanted nothing more in life than to like keep up with his big brother. One night it had been just a very normal day.

It was actually Ethan's [00:03:00] second birthday party. Jake was kind of the star of the show because he was just one of those babies. He didn't need to be with me. Like I could hand him over to anybody and he would, he'd be good. He was like, hey, so the whole birthday party he was just being like kind of passed around and hanging out with family and friends.

That night went to bed. Sort of everything was normal. In hindsight, if I'm like, oh, was he a little fussy or like, I can look for things, but at the time I didn't think anything. He woke up at 2. 30, which again, he was 8 months old, so was not completely out of the norm. He wasn't a great sleeper. And I noticed a really small twitch in his hand.

And I was kind of like, oh, that's weird. But I was still kind of getting ready to feed him, and it was 2:30 in the morning. But it wouldn't stop. So I woke up my husband, I was like, this is weird. And then he held him, and he's like, oh, it's weird. Because it's like, when we held him, you couldn't make it stop.

Where we were thinking if it was like muscular, or like a twitch, or like he had slept funny or something, you'd be able to sort of pause it, and we couldn't. [00:04:00] Like, I just had that pit in my stomach that I was like, something's wrong. Not that it was as catastrophic as it turned out to be, but just that something was off.

And we took him to the emergency room. Because I remember saying to Brian, there is zero chance that if I call our pediatrician and be like, hey, his arm is twitching.

Jessica Fein: She would be like, you woke me up for this? 

Heather Straughter: Yeah, exactly. Like, go back to bed, we'll deal with this in the morning. So we went in, and honestly, the attending at the emergency room was like, we do not have a pediatric neurologist, but he's having a seizure.

And I was like, what? Because again, at that point in my life, to me, a seizure was what you saw on TV. 

Jessica Fein: I totally get that because what we know now is called, at least in Dalia’s case, myoclonus. Yeah. She had myoclonic seizures and it's just like that. It started with a twitch in her hand. And I remember the same thing, a neurologist saying, has she had any seizures?

And I was like, no, she hasn't had any seizures because we envision that grand mal seizure you see on TV.  And he's like, that's a seizure. And I was like, what? She does that all the [00:05:00] time. 

Heather Straughter: I know, well that was kind of, I was like, this is wild. Because honestly, even though that was happening, he had taken a bottle.

When we got to the emergency room, he was still sort of himself, and they were doing x rays and trying to find an IV and stuff, but he was still sort of almost flirting with the nurses. All this stuff is happening, and you're telling me it's a seizure, but I'm like, No, look, it's not a seizure. What are you talking about?

But lo and behold, it was a seizure. They could not stop it. They could not get it under control. It quickly became evident that they did not have people in place that could take us to the next level. So they were looking to get us other places. You know, you live in the world of like, what if, you know, and there were so many what ifs of that night, like, what if we hadn't moved from Boston?

Because ironically, we had moved from Boston in July, and this was in January. So, had we not moved, had we not picked up our family and moved to Saratoga Springs, we would have been, you know, five minutes from great hospitals all over the place. My father had come to the hospital and he was like, let's get you to Boston and he was trying to figure out if he could, like, get us on a helicopter and then the helicopters weren't flying because it was windy.

I was like, are you kidding [00:06:00] me? And still, it's like 4:30 in the morning at this point, right? Like, 5 in the morning. We're still like, what is going on? 

Jessica Fein: Was there, at that point, a sense that time was of the essence or was it just your feeling of urgency? 

Heather Straughter: It was both, I think. I was starting to spiral because I was like, none of this is making sense, I don't understand, but I could see that the doctors were as well.

He was eight months, so they had to try and figure out how to get him some medication to try and stop it, and the longer it was going, he was deteriorating. And, to be honest, it was such a whirlwind that I remember just kind of saying, but no, he's fine, let's just take him home, because I was so scared, and I could see him getting worse, and there was that part of me that was like, well, what if I had just ignored this?

Like, what if we didn't? You know what I mean? Like, I kind of lived in that. Like, what if I just looked the other way? Because then maybe everything would be fine. It became clear that we had to go somewhere else. We're like, let's go to Boston. Brian's family was still there. We had just moved from there. It made perfect sense to try and get back.

And we got in the ambulance. It was Jake and I. Brian was driving kind of behind the ambulance and he tells the story where [00:07:00] they said, don't try to keep up with us. We're, this is not an emergency. We are going to be getting there quick, but he's stable right now. Jake is stable. And he tells the story of where maybe an hour into the ride, the lights went on and speed took off.

So he knew something was happening and he kept up with the ambulance. They ended up diverting us to Bay State Hospital in Springfield because they could not control these seizures. I just remember sitting there, right? You're like, like my baby's there, all of a sudden hooked up to things, has all this stuff.

And I'm like, wait a minute, three hours ago, four hours ago, we were just a normal family. Like, do I mean, I just can't remember being that like, like, how does this happen this quickly? 

Jessica Fein: It's an out of body experience, you know? I remember my first time riding in the ambulance with Dalia feeling like I was so present.

And also I felt like I was watching this from another place altogether and being like, what's going on here? 

Heather Straughter: I didn't really even know that you could question doctors, right? I didn't even know that you could say, what's happening. I didn't know any of that. I was just in awe of what was happening. And like you said, I was in there holding his hand, like, so present, but then also floating above being like, [00:08:00] wait, what's happening?

You know, and because it had been Ethan's second birthday, we had friends who were at home. 

Jessica Fein: I was wondering, I was gonna say, what's going on with your other child.

Heather Straughter: Like, where's Ethan? Yeah, the two year old's on his own. No, we had woken up my friend Carol Ann, and I was like, something's going on with Jake. I I expect us to be back soon, but if we're not back in the morning, just take care of Ethan.

Because again, even though I was like, I knew we had to go to the ER because I felt like it was weird. I still thought they were going to be like, Hey, it's all set, you know, or, or, oh, no big deal. We just need to do this. And you know, I thought we'd be home that afternoon at the latest. So we stop in Bay State, that turns out to be horrific.

They treat him with propofol. You know, I don't live a life where I think of regrets, but I wish we could have removed that entire experience because something happened with Jake, right? He had the seizure. We don't know what it was. Even when he died, he was still undiagnosed. So we don't know what triggered that seizure.

But what we do know is that when they treated him with the propofol and they put him in a medically induced coma with propofol at eight months old, that made everything significantly worse. And [00:09:00] after a couple days of it, I was like, this is insane, like, my kid might die right now. And I came in with, yes, a kid that was having an issue, but now he might die.

That's when I sort of found my voice a little bit, and Brian found his voice, and we were like, you need to get us the hell out of here. So we took a helicopter to Boston Children's and I remember getting off the helicopter, like getting in there and just, I mean it felt like hundreds, but just doctors flocking and just all the things happening and just standing in the back and then finally someone seeing me and being like, you gotta get out of here.

I'm kind of standing in the hallway and then Brian showed up. But basically they were then for the first several weeks treating him with propofol intoxication. And they went on to say that at Boston Children's, they would never have treated an eight month old with propofol. You know, they don't even do it for anyone under three, nor do they even really like to use it at three.

Like it's what Michael Jackson died. 

Jessica Fein: That's what I think of every time I hear the word propofol, that is the first thing I think of is Michael Jackson. 

Heather Straughter: Yeah. And we honestly, when that happened, I feel like Brian and I had like [00:10:00] PTSD, you know what we were like, I was like, what? Propofol? Like, why is that even a thing still?

But then we were at Boston Children's for 117 days. 

Jessica Fein: So meanwhile, what's going on? So you call your friend at home, you're like, okay, guess what? We're not coming home today because let's remember you have another child who's only two.

Heather Straughter: Who's two. So when we were at Saratoga Hospital, my parents were flying, I believe it was Australia, it was either Australia or China, like a big trip, and they were at the airport.

So all this was sort of happening. So Brian, at one point, had the sort of wherewithal to call my dad and say, you know, hey, just so you know, this is happening. I'm not telling you not to go on your flight, like, we don't know enough. But just FYI, like, we are in the emergency room. We're not sure what's happening, but something's going on with Jake.

So they did not get on the plane. They came to the emergency room. My dad kind of came in and was like, okay, how can we fix this? 

Jessica Fein: I love your dad. 

Heather Straughter: He was calm under pressure, right? I just remember being like, no, no, no, we can figure this out. And he called someone who said this. You know, I mean, we kind of just got the balls moving.

Jessica Fein: It’s so interesting how in that, [00:11:00] like, most maternal and or one of the most maternal times of your life, how we then look to our parents. I remember feeling like I just wanted my dad around because I needed an adult. 

Heather Straughter: Yes, that's 100 percent right. Because when he walked in, I was like, okay, because I was like, Brian and I are not equipped to handle this.

So luckily they had Ethan and I still, I still was thinking like, Okay, maybe a week in the hospital, right? Maybe a week while we get this sorted. I kind of kept thinking we're just going to get this sorted and I'd be okay. You know, like it was gonna be fine. 

Jessica Fein: And this would be a blip. 

Heather Straughter: This would just be like a little blip. Exactly, this was going to be a chapter in his journey, right?

It was just a piece of his story and it was traumatic and it was crazy, but we would look back on it and be like, Oh my God, you remember that? 

It’s be a moment, but it became his life. It was in the first couple of weeks when we recognized that this was not going to be a blip, that this was going to be a sort of a significant stay because at this point, they were doing different medically induced comas.

They were like trying to undo some of the damage of the propofol, but there was still this [00:12:00] underlying thing that they were trying to figure out. So there was genetic testing and, you know, trying different meds and intubated. Extubated, like all of these things, just trying to figure it out. And meanwhile, I remember just being like, what is happening?

At points, he did not even look like my little boy anymore, right? Because he was retaining so much water with some of the stuff that they were putting him on. So he was super bloated. Then they would give him a diuretic. Then there'd be a reaction to the diuretic. When hospitals, it's like snowballs. Don't even remember why you're there sometimes because you're dealing with all these other things.

So when that was becoming clear, I was like, Ethan has to be here. You need to bring me Ethan. Ethan and I got a hotel room, and we stayed there every night because we had lived in Boston, we had friends, and we knew people with kids Ethan's age, so a friend of ours who lived in Jamaica Plain had their kids in a daycare, and they got him a spot, so I would drop him off, so he would play during the day and not be in the hospital all day every day, so he kind of had that, so I, we would get up in the morning, Ethan and I, I would drop him off, I'd get to the hospital for rounds, [00:13:00] Because Brian and I had, you know, I was really good with the rounds and the remembering and the, wait, two weeks, the attending two weeks ago did this and it didn't work.

Don't try it again. That was my brain. But he was there at night. He did not get scared if the noises came in. He would tell the nurses, stop, Jake's finally resting. You're not going to poke him right now. Like, like he was that guy and he was so good at it. 

Jessica Fein: What a gift to you, if I may say that, because that overnight at the hospital is so totally otherworldly, and that he did it every night.

Heather Straughter: He did it every night, and it was twofold, right? Because part of it was like, oh, we got this routine, and now we can handle this, but also then it was this surreal moment of like, God, what are we handling? Like, we have made this normal, but it's anything but normal. Like, I'm living in a hotel room with my two year old, you're living in a hospital with our, at this point, nine, ten month old, and we're acting like this is normal, and it's not.

Jessica Fein: Were you working? I mean, maybe you had two babies. I don't know if one or both of you weren't working, but did you have jobs that you needed to deal with during this time? 

Heather Straughter: So when we moved [00:14:00] from Boston, we were both educators. He was a principal at the Mission Hill School and I was a special ed teacher in Roxbury at the Mason School.

When I was pregnant with Jake, I very much got homesick and I was like, I need to move back home. So Brian's like, yeah, let's move. So he ended up working for my dad for our family business, which is like in the hotel business. So since that happened, it was kind of like this crazy blessing in disguise because at 117 days, he still got a paycheck.

Jessica Fein: I have to say, having had an extended hospital stay as well, which you and I have obviously bonded over, shall we say. But, you know, I remember my husband and I both worked full time and We were able to negotiate leaves of absence, but it was complicated. And I remember seeing other parents who were in the PICU, the Pediatric Intensive Care Unit, for people who don't know, for extended periods of time, who weren't able to negotiate that, who didn't have that quote unquote luxury.

And I choose that word deliberately because my heart went out to these parents who didn't have a choice, but had to leave their baby and go to [00:15:00] work and then come back. 

Heather Straughter: Brian and I talk about this little boy specifically, and we kind of argue whether his name is Angel or not. We believe his name to be Angel, so who knows?

But Jake very often had his own room, because he was, even at Children's, was sort of the Sickest on the floor, you know, but sometimes depending on what was going on or what they were trying He would have a roommate and there was this little boy who was his roommate for this period of time and his parents would come In so sporadically and what both Brian and I recognized was they did not love that little boy any less than Brian And I did they did not have the resources so they could not take off work.

They could not be there And we were heartbroken for them and for Angel, and we kind of like would advocate for Angel, and I would always kind of talk to her, and I was like, I can let you know if you need anything. Just because their boss did not give them a leave. Their boss did not say, oh, leave early and go see your son.

I didn't know it at the time, but after Jake passed and when we started our foundation and all that, it was almost like Angel was the catalyst of that because we wanted to be able to [00:16:00] support families in some way where they could be with their child when they needed to be. 

Jessica Fein: So, what happens then after the 117 days?

First of all, what changed to let you get out of there after 117 days? And what did life look like on the other side? 

Heather Straughter: As you know from an extended hospital stay, it's not like all of a sudden one day they're better, right? Like, all of a sudden we were just like, this is insane. We need to get out of here because we'd start to get close to get out of here and then there'd be an ear infection, right?

And then you couldn't leave because an ear infection would then turn into a double ear infection, which then would turn into all this antibiotics. And, you know, once they treated him with vanco, and then he had the red, the hives all over. Like, we just, we'd get this close to go, and then couldn't do it. So, finally, we were like, we just need to leave.

He had spent his first birthday at the hospital. We were losing hope, too, a little bit. Like, in the beginning, there was hope, right? It was like, okay, this doctor's gonna figure it out. This doctor's gonna figure it out. We finally did have one doctor who was like, you know what? I know that nothing has worked.

Like no meds have worked. The [00:17:00] seizures are still going. We're not making any progress. It's not FDA approved, but there's something happening in Canada that I think might be beneficial. What do you think of it? And we were like all in, I was like, I'll sign, I'll pay, I'll do whatever. I remember Brian and I standing like right on the side of the hospital bed.

And all of a sudden our boy was still, it was only for like 20 seconds or something, but the medicine. Slowed it. This settled him a little bit. And this doctor, Yaman Eksioglu, he was just like a godsend. He saw that it was time to go home. Some doctors, they were all great, but some, like, they just were seeing us almost as a study or a, I don't know, like an experiment.

That sounds worse than I mean it, but it's just like you kind of felt like you were A learning situation for them. He saw us as this family that was in crisis and needed to get home. 

Jessica Fein: That's such an important distinction. I've encountered physicians along the way. We had some of the most unbelievably skilled, incredible family focused physicians.

And then we had some that [00:18:00] definitely did feel more quote unquote academic. And I actually had the head of neonatology at a very big hospital take my chapters from my book on life in the PICU and have the entire hospital staff read them because she said, you need to understand what this experience is like for a family.

And I thought, well, first of all, I was very gratified. But I thought this is such an interesting thing to have them understand from the patient's point of view, not just at a moment in time, but to be able to actually see what it does to the family. And I think that doctors who get that, like this person you're describing, it changes your life.

Heather Straughter: It changed all of our lives, right? It even changed Jake's life because to see him not as this really rare sick kid that no one knows what it is, you know, and I don't even mean this is disrespectfully or as bad as it sounds, but like to some doctors, he was just so interesting, right? Like it was like, Oh, I've never seen anyone like this, 

Jessica Fein: Which is not like you ever want a doctor to say, right?

You never want the doctor to say that. [00:19:00] And you never want the doctor to say, well, I was just on Google reading about this. Which I had doctors say to me, and I was like, you are joking. 

Heather Straughter: Yeah, like, just, even if that's true, never utter it. Don't tell me, I don't want to know. Be quiet. So, he just saw Jake as our son.

And, like you said, it was what we needed, because we were losing hope. And he kind of gave us a little bit of hope. And it wasn't an easy journey, but we finally got out of there. There was another few more hiccups. Like, they tried to send us to Spaulding Rehab. 

We had that too. 

Oh, did you? 

I think we lasted there for 90 minutes.

Bingo! Right? Like, we got there, and they were like, we don't do this. 

Jessica Fein: That's exactly what happened to us, and I remember I was with Dalia, and they sent us in an ambulance to Spaulding, and we thought, we're getting out. Because for many people who might not know, often you need to go to rehab as a step down from the hospital situation.

And I remember filming it and sending pictures to everybody I know. We're free! We're free! I mean, this was the greatest. And Spaluding was beautiful. And I was like, this is the Four Seasons. And I [00:20:00] was so excited. 

Heather Straughter: Where like the Patriots would rehab. 

Jessica Fein: This is so funny. Cause I've never spoken to anybody else where this happened.

And literally the doctors came in. I don't know the doctors or somebody. And they were like, Oh, no, this is out of our league. 

Heather Straughter: Exactly. Sent us right back to the hospital. 

Jessica Fein: I remember like not even knowing how to call my husband because he was with our other kids to tell him. It was so deflating. 

Heather Straughter: It was horrible.

And I remember the one person, I don't, again, don't remember if it was a doctor or a nurse, was so like visibly like, no, you can't be here. And I just remember like mama bear mode, like papa bear mode. We were like, what are you talking about? And then kind of with our heads down, we got back in the ambulance and off we went and I think probably the same room or maybe our room was gone and we had to go to like a worse room or something.

But then I was like, we are going straight home. And I remember Brian being like, I don't care if you need us back here in five days, like, we will come back once a week, but we are going home. This is done. So you go home finally, it's a hundred and seventeen days [00:21:00] later, it's like a whole new life, right?

Like I remember walking into the house and not even feeling like it's the house, right? Like we just didn't know what to do and being so scared. So scared because when we brought Ethan home we lived in Boston and we kind of would look at each other and be like, okay, now what? You know, like if you have this like little baby and we were kind of like we don't know what to do.

No, like they just let us bring this baby home. Like what? But you figure it out and it's typical and it's just You learn. 

Jessica Fein: Everybody you know has been through it. 

Heather Straughter: 100%. You know, you can have someone sit with the baby, like you can just do things. And like you said, everyone you know has had this. So you're like, okay, this is so different because nobody we knew knew anything about a life like this.

And I didn't know the term them, but we did, we had some PTSD, because I was like, how can we possibly keep Jake alive when all these other machines and bells and whistles and things are being monitored? And, and it was so hard for me to trust myself, to trust Brian, to like, to sort of trust us that we'd be okay.[00:22:00] 

And the other piece that was so different was there was nonstop, we got home and it was early intervention. So there was five days a week of PT, there was three days a week of OT, there was speech. And what that did initially for me was it gave me again, more false hope. Like I lived in this false hope world again, because I was like, Oh, they must think that now he is going to get better.

Otherwise, why would we have so many therapists? So I remember vividly Brian and I being like, okay, so he's a year old and he's lost all his milestones, but let's give it, you know, six months. Maybe he'll be sitting on his own. Maybe by the time he's two, he'll be crawling. Like we thought we were padding this timeline, but we thought it was actually going to happen.

And it wasn't until one of the therapists who I kind of became friends with, all of them I sort of became friends with because there's these people in your house all the time, she was just like, Heather, I don't know, like, stop asking me this. You're not asking the right questions, was essentially what she said.

And I got so mad and I was so hurt and I hated her in that moment. But in all honesty, it's what I needed to hear. Because [00:23:00] once she said things like that, I was able to sort of see the small improvements. And I started to recognize, okay, Jake is going to constantly need care. Jake is going to need 24 7 help for every part of life.

He's not likely going to sit up, walk, talk, crawl, any of those things, but let's see what he can do. It was kind of that moment where I was like, let's figure out how to live this life and give him the best life and give our family the best life. 

Jessica Fein: During this time, were you still searching for a diagnosis?

Because You never got a diagnosis. 

Heather Straughter: Never got a diagnosis, and I reached points where I was like pretty obsessed with it. Like, I would kind of ups and downs, but I would sometimes go right down that spiral of, I don't want to say anger, but kind of anger. I was like, what do you mean you're telling me you don't know that you can't figure it out?

There was some doctors that would say, you're kind of glad you're not figuring this out, because some of the things we're testing for are really horrible diseases, and they're fatal. And I remember one doctor basically said to us, like, you think a diagnosis is going to give you answers, But some diagnoses, [00:24:00] like, there's so few people, it's so rare, and it's almost like it's giving you a sentence because no one has lived past X age with this.

So then we were okay in the limbo a little bit, but honestly one of the hardest things would be, even good friends would be like, so what happened? Or like, what do they have? What is, you know, and I'm like, there's no answers to these questions, and sometimes other people would make me feel like it was a bigger deal than I thought it was, if that makes sense, you know what I mean, like, you learn not to care what other people think as much, but there's a part of you, or at least a part of me that always does.

Jessica Fein: Was there anybody at that time who did it right? Was there anybody who really got it right that stood out for you? 

Heather Straughter: Oh, I think there were a lot of people. Like, I do think that one PT, and I always remember being like, how in this small town of Saratoga Springs that we live in, is there this PT who is focused on special needs pediatrics?

She was like this gift. She became a very close friend, as did another PT in that office. I feel like they guided me in some ways of just being okay with it. I sometimes [00:25:00] say I feel like I'm the elephant in the room because Jake died, but at that time too, I was also the elephant in the room because it was like, oh, look at that kid, like what's going on?

And they helped me not feel like that. They helped me feel like, hey, there's other people that are having this. There's other families like yours. Because again, this was like 2007, 2008. Yes, there was the internet, but it wasn't the same as it is now. It wasn't like we're all scrolling our phones. So I did feel so alone.

I felt so isolated. And there were people when we moved to Saratoga who I became friends with in that way that you become friends with other moms that have kids your age. But then there's some that who actually become like friend friends. There's two in particular who just, they knew us before Jake got sick and they stuck with us after.

And they always have, to this day, such a near and dear spot for me because they knew us before. Where so many people in my life knew me before. After he got sick, and then even more people now never knew me as Jake's mom at all, just knew me as like, Jake's help from heaven, or someone who talks about [00:26:00] grief, or someone who's out there talking about Jake, but never knew me as Jake's mom, the actual mom.

You know what I mean? 

Jessica Fein: I know exactly what you mean. In fact, I was just speaking on something the other night, and we were talking about the different kinds of friendships, and I, I'm very fortunate, because I have a lot of people I've been friends with since I was a kid. And those people, I knew all the characters in my life, you know, I've had so much loss and the people who knew me then and knew all the players because there's a lot to catch somebody up on if I meet somebody now, there's so much and it's just like, and I don't know about you, but sometimes I just don't have the energy.

Jessica Fein: So then what happened when Jake is four?

Heather Straughter: Okay, so between one and four, we really, you know, again, this is kind of looking back and making things a little simpler and easier, but we really figured out this life, like we had a pretty good life, like we knew that no, we couldn't travel and we couldn't do some of the things we thought we were going to do, but we could do things like we'd get in the car and we could go to like this place called Lake Placid that was, you know, 90 minutes away, or we'd go up to Montreal, which is like three hours from here, we would find little adventures to have.

[00:27:00] And Jake loved to be at the bowling alley because, like, he could watch his brother do stuff, and there was lights and noise, like, there was just stuff we could do. I don't know, I, I think we were doing a pretty good job. I was constantly pushing still all the way up until he died. For a diagnosis, we ended up working with a geneticist at Mass General, and I always feel like she was getting real close.

We just had this good team and this great life. And people would expect that because he was as ill as he was and he had these like ups and downs medically that we were ready for him to die. The fact of the matter is that because there was no diagnosis, it was just sort of like, okay, here's some good days and then here's some bad days.

At the end, ironically, we were pushing kind of hard to get him off some of his meds. So we were working with the doctors and titrating some meds down. And, I don't know, all of a sudden, he cried one day. Like, he just cried. Bald one day, like we were standing out in the deck and Brian and I were like giggling.

We were so happy because it meant he felt something. He was responding and as a result, he was also doing better in OT and PT and all these things. So there was part of that life and, and there were also like [00:28:00] negative things that were happening. He broke his femur. All these other things happened, but we had hit our stride, I guess.

I felt, and then one day, and I always sort of say it, it was just a Wednesday, right? It was just a Wednesday. He had broken his femur, so he was in a spica cast. He was casted from under his armpits all the way to his ankles, and he was held in sort of almost like a sitting position the way he was casted so that his femur was held in place and nothing else would move, and he had to be in it for like four weeks.

So he had been in it at that point when he passed about two weeks. It was kind of this lesson and a curse, because we had previously been, like I said, titrating the medicine down. He was more aware. It's almost like he recognized that this sucked, right? Like that it just sucked. And I, I, jokingly, not jokingly, had said to his pediatrician, who at this point I was really good friends with, I was like, I feel like he's depressed.

I feel like he kind of knows right now that this chapter in his life is not a good one. Like it's just kind of sucky. But one day, we're sitting there, my friend Heath came over just because I couldn't leave the house either, so she came and sat with us for a little while. Blah, blah, blah, blah, [00:29:00] blah. Life was fine.

Brian was at a meeting north of where we lived. I picked Ethan up from school. We had someone who would kind of sit with Jake after school so that I could kind of be with Ethan, and if Ethan wanted to stay after, could do it. Came home. Kate left. I get dinner ready for Ethan. Ethan thinks it's a great day because we're sitting in front of the TV, eating dinner.

You know, I'm feeding Jake. Like, it's just a day. And then all of a sudden as I'm feeding Jake he, without going into too much detail, but he just like kind of coughed and had this like little bit of, I don't even know what, I mean he aspirated, but I think had aspirated and it just, all of a sudden he, like the color was gone of his face.

I screamed, screamed at Ethan. I was like, Ethan call 9 1 1. Poor five year old runs, calls 9 1 1. Luckily, where we live, we're super close to like hospital and police station and stuff. And I don't remember the exact timing, but I know that all of a sudden my house was filled with people. Ethan was sort of standing in the corner watching it all.

I called Brian. So they're trying to kind of like do CPR, but he's got the Spica cast on. And [00:30:00] God bless him, they had no idea what that was. Like they, they were like, what do we do with this? How do we take it off? And I'm like, it's a cast. You know what I mean? Like it was just this chaos. And I remember calling Brian and I was like, something's going on. And I think Jake died. Like, I can't imagine being on the other end of that call, like, I mean, just because he was like, wait, what are you talking about? And I don't even know that I finished the call, like I might have hung up on him. I don't know. So he gets in the car, and he comes down, we all end up in the hospital.

And they were being a little weird, like I think because he was a kid and they didn't understand the cast, like they wouldn't let me go in the ambulance, I had to go in the police car. Like there was all these like things happening, but it was just similar to like when he got sick. It's like here we are one minute, and life is a hundred percent normal, and then here we are, and we are not.

And I still struggle with how can that be life, right? Like how can things change like that? And I have to sometimes. Even all these years later, Jake's been gone 13 years, but I have to kind of center myself a little bit. Otherwise it's impossible to parent. It's impossible to live. Like it's impossible when you've lived through those moments.

It's hard to not be a whack job for lack of a better word. You know what I mean? 

Jessica Fein: [00:31:00] It’s hard not to be a whack job. But it also gives you such a different level of awareness. My sister's death was sudden and I had been on the phone with her like a couple hours before and we were chatting about sisters chat about, you know, we were actually going to do a trip in the summer and she had just come back from a wedding and she was telling me about that.

I was like, I gotta go. I'm at work. I'm at work. You know, gotta go. It was just like a Wednesday, as you said. And I go off to lunch, and I come back, and I get a call, and she had died. Life changes in an instant, and you nailed it, because it's like, once you have lived that, you have two different things going on, because on the one hand, if you think about that, like, actually think about that, you cannot function, you are a whack job, because you're like, every second something could change.

Heather Straughter: How can I send Ethan off into the world when I know like this, it could change? 

Jessica Fein: You also live a little differently because you know it could change, right? Did you find that you lived a little differently?

Heather Straughter: A thousand percent. I mean, I will say I live very differently, certainly differently than before Jake got sick and even more so after he died, because it was kind of like a two step lesson, right?

It was like one step changed [00:32:00] me and then the next step changed me again, more profoundly. We live this life of like grief, right? But I think about how much I talk about it and how I meet people and how I bond with people over it. And then I think about like generations before us that did not talk about any of this stuff.

And therefore I don't think they allowed, because there's, I don't want to call them lessons, right? But there are these shifts. And I, and I do appreciate life and I do, I don't want to say like seize the day, but I kind of do. And I don't sweat the small stuff. And that's not to say every moment is perfect in my life, but I'm like, who cares?

And not to be like callous about some stuff, but really like, this is what people are going to worry about?

Jessica Fein: It's been many, many years for you and you write letters to Jake, even now. Even now. I have two questions about that. Why do you write the letters to him, and why do you make them public? 

Heather Straughter: So, both of those are very good questions.

The first time I wrote a letter to Jake, he was still alive. I wish I knew where the idea sort of even came from, but I remember just, I was sitting on the couch, and he was kind of [00:33:00] propped up next to me, because he couldn't hold himself up, so we would always either have him in some sort of seating thing, or, but sometimes I just kind of flopped him next to me, because I was like, hey buddy, we're just gonna like, This is it, we're just kind of snuggling.

And I remember wanting to tell him things. I remember, oh, and I always talk to him, like, out loud, but I remember just kind of wanting there to be this, like, record of my love. I don't know why, I just sort of did. So I was like, hey, and this was, I don't know, I think it was like, blogs were kind of a thing, maybe?

Like, some people were doing blogs, or there was, like, mommy blogs or something. And I was like, hey, let's just do this. And to be honest, when I started it, I did not even realize that I had it set up to, like, publish on Facebook. I didn't even know. Like, I'm starting a blog and I'm writing to Jake. I was just kind of sitting on the couch, sort of putzing around, and it ended up posting to Facebook, non intentionally, and friends and family and people were blowing up my texts and sending me really beautiful, kind comments.

And they were like, I had no idea you felt this way, or I didn't know how you parented someone like Jake, or I never even thought about it. It [00:34:00] just became this way that other people. Could also see inside where I was because it goes back to the loneliness, right? I'd always felt so lonely and I never wanted to talk about my life with Jake to people who didn't.

I didn't want to see, like, I just, I, I struggled with that. And this was just this way that not only could I kind of have this conversation in a different way with my son, but. But inadvertently it became this way for people to get to know me as Jake's mom in a different way and who I was and what I was thinking.

So I kind of just here and then would just write. And then when he passed, it's like the angry years, right? Like they were really like direct and angry and I don't want to say rage filled, but some of them were pretty harsh, you know? And again, it gave people a kind of a thermostat of where I was, like they could kind of figure out where I was.

And sometimes that wasn't great. Sometimes people would say stuff like, oh, it makes me sad that you're writing such anger. And I'd kind of be like, well, pretty much what I said. Yeah. You know what I mean? Like not, not quite as nice as that. So I kept on it for a while, more just for those [00:35:00] reasons, really, like just was a way to connect with him.

And then I just stopped like one year I just stopped. And I, I was like, I'm not doing this anymore. I don't want it to be public. And I recognize that I could be writing them without it being public, but I just stopped the whole thing. It became too much. And then. I just started again when Ethan went to college in the fall.

I had a real struggle that took me more by surprise than I expected of when he was gone. Like I just had this hole in my heart that I, I felt this sadness that I had not felt in the same way in so long. And I wrote this letter and it sort of was the same thing. I, I had it hooked up, like I'd never changed the way it was set up.

So then it was kind of out there again. In that moment, people were like, we love hearing these. These are just like these great ways of connecting. So then they're just now they're on the website. I think I write a little less because they're public. I do. And that, you know what I mean? Like, cause sometimes I'm like, Oh, I censor myself a little bit, which I didn't in the beginning.

Jessica Fein: One of the things you said in a recent letter is that you've become less religious over time. And I thought that was interesting because I [00:36:00] get that and I could see people going either way. Why did you become less religious? 

Heather Straughter: So I was raised Catholic, always like went to church on Sundays, kind of girl, like did the communion, but religion was never a huge part of my life, but I did all of the things.

And then in college and in my 20s, I yin and yang, I was like, Oh, I'm, I'm atheist. And then I was like, okay, now I'm Catholic again. Like I, I kind of just explored all sorts of different things. And then, after Jake died, I religiously, no pun intended, had to go to church. I needed to believe all of the things about heaven and about God.

I needed something because I could not live in this world where there wasn't another world for Jake to be at. Because all of the things that I would, like, push away from religion, I needed. I needed that kind of routine, and I needed to say the prayers that I'd known since I was a kid, and I needed that structure.

And then my grief journey sort of changed. I didn't need it in that way. And sometimes, at least in Catholicism, there were more things that were [00:37:00] bothering me about the religion in general, and I didn't want Jake tied up in that. Like, it really all comes with, like, my brain connecting things sometimes that should be connected or shouldn't.

So, I now feel comfortable that Jake is with me and I don't need the structure of religion to make that feel that way, but I definitely did for a little bit. Like I definitely find these other ways in which I just know Jake is present. 

Jessica Fein: Tell us a little bit about Jake's Help From Heaven. 

Heather Straughter: So, after Jake passed, I was very much like, I need to do something, because at this point, you know, I had stopped working when Jake was in the hospital, and there was no chance of me going back with the amount of care that Jake needed.

My husband worked, Ethan was young, all of this stuff. And then, when Jake died, Ethan was in kindergarten, and there was this part of me that was like, what now? My entire life was just being Jake's mom, and fighting with insurance, and taking him to therapies, and feeding him, and all the things. And then it's gone.

And then it's gone. And that was really scary to me. Like there was a lot of that. I was like, what to do? And there was, [00:38:00] I guess this bigger hole of like, I still need to be able to be Jake's mom. And how can I do that? Sometimes people are like, Oh, it's so great. You started this foundation. I always kind of have this little like asterisk next to it that I was like, it was very selfish also, because I needed a vehicle in which I could keep Jake present and that I could continue to be Jake's mom.

It was going to be so easy now. And so fulfilling to be Ethan's mom. I needed to still have Jake present. And I wanted to have a reason to talk about him that would not necessarily continue to just make people feel uncomfortable. And it goes back to like the story of Angel, right? We met so many people along the way in hospitals.

And I knew how to advocate because I was a special ed teacher. And just because I learned to use my voice. But I saw so many people who didn't know they could push back. Who didn't know they could ask insurance? Insurance was turning down items, you know. Medicaid will cover a new wheelchair every five years.

That's fine when you are, you know, potentially fine when you're 20 to 25, but when you're 2 to 7, it's the most absurd thing in the entire world. We wanted to help families [00:39:00] get what they needed to just have quality of life, and we had figured out ways in which we could kind of thrive as a family, as a special needs family, and we wanted other families to have that too.

So that's where it came from, Jake's Help From Heaven. And we literally did not know what we were doing. I was like, I think we need to get a lawyer because I think we need to be official. And we had my dad's accountant at one point, it said, if you're going to do this, you need to not have a board of directors.

That's just your family and friends. You have to have a reason why you're asking everybody. And if you want people to take you seriously, This is what I recommend doing. And we kind of followed some of that to a tee. Like we asked people in the community or doctors and people who each had a role. And now 13 years later, we've given away 1.7 million in grants and we've helped a thousand unique people. We allow people to keep coming back. Some of these kids, I swear it is again, the last trick of being selfish. It allows me to be with kids like Jake, right? I love that world and I miss that world. It doesn't mean that I love the pain and suffering and the hard life they had, but there's just such [00:40:00] value in all life, right?

And so many people look at people like our kids and they think they matter less. And I just, I feel like my voice now is to make sure everyone knows they don't matter less. 

Jessica Fein: The work is incredible, and I happen to know people who have benefited greatly from what you're doing, so I see what an impact it's making.

Thank you for sharing this story with us. 

Heather Straughter: Thank you for having me. I'm so happy to have met you, and I love this conversation, so thank you. Happy to be a part of it. 

Jessica Fein: Here are my takeaways from the conversation with Heather. Number one, honor the pit in your stomach. It does not hurt to trust your intuition when you think something might be wrong.

Number two, you have the right to question doctors, to ask what's happening, and to share what's right for your family. Number three, sometimes the comments that make us mad and make us hate the person who said them aren't true. are exactly what we need to hear. Number four, there is huge power in shifting your focus from what someone can't do to what they can.

And number five, allowing others to witness and share in your journey, even in your darkest times, can be a huge gift, both to yourself and [00:41:00] to them. Thank you so much for listening to this episode. Talk to you next time.