How One Mom Turns Grief Into ‘A Place Of Yes’

Ethan, Jake and Heather 

Learn more about Heather Straughter, Jake’s Help From Heaven and her podcast A Place Of Yes.

TRANSCRIPT

‘The Best Kind Of Training’

Heather Straughter never thought she’d become a teacher. Then again Heather never imagined most of the things in her life. 

I had these kind of big dreams of like, I wanted to write for the New York Times, and I wanted to do all of these things. And it just ... like, life kept kind of pivoting.

But in a weird way being a special ed teacher in an urban Boston district turned out to be the best kind of training.

I was a fierce advocate for my kids. There was this fire in me that just felt that was so unfair... There just wasn't the resources. 5:20 I just wanted to get in there and be like, ‘how can I get these other kids in other districts are getting things, and my kids aren't?’

This is a story about how these advocacy skills came in handy again and again throughout Heather’s life. This is 2 Lives. I’m Laurel Morales.

Saratoga Springs

In 2006 Heather and her husband Brian were enjoying the life of new parents. They had two sons 15 months apart, Ethan and Jake. 

Ethan and I were like a work in progress for a long time with that. Jake just was like, boom. He was born instantly wanting to keep up with his big brother…he just, he entered life knowing what to do. And he turned over early and he just would sit there and like watch his brother. I always wanted to be a mom, yes, but I didn't have that driving force, like, in those first months, I was like, this is it. This is what people strive for and what you want, and I've got these two great boys, and they're so beautiful, and it really felt, I don't know, magical.

LAUREL: Do you remember anything shifting for you when you became a mom?

HEATHER: I remember it being harder than I ever imagined, right? Like I remember one night we were like, okay, you know, they say that you gotta let them cry it out. And I remember… my husband and I sat on the couch the whole night and we were just looking at each other and I'm like, I'm gonna go. And he's like, nope, they say we gotta let them cry it out. Like, just your heart is literally outside of your body, and it's all -encompassing.

Two months after Jake was born they moved from Boston to upstate New York thinking since the babies were born they wouldn’t need the amenities or hospital that a big city offered. 

January 21, 2007

So it was the night of Ethan’s second birthday at their new home in Saratoga Springs. Heather and Brian had invited family and friends to celebrate.

Jake was, in some ways, the life of the party. He was just an eight -month -old that didn't need, he wasn't clingy. He didn't need to be with his mom or dad. Like, it was like pass the baby. No matter who he was with, he was happy.

After everyone had left and gone to bed Heather got up to make Jake a bottle.

And as I was getting ready to feed him, his hand was doing this twitch. And I woke up Brian, and I was like, ‘this is weird.’ And he's like, ‘well, maybe it's just like a muscle spasm.’ But we kind of hugged him, tried to hold him. And you could still feel the pulsing. And there was something in that. I don't know if it's mother's intuition or like this parent thing, but I was like, ‘Brian, we need to go to the emergency room.’ I knew there was no way to convey the fear and that gut feeling that something was wrong. 

Heather woke her friend who was staying the night to tell her they were taking Jake to the emergency room, and to please be on Ethan duty. They went to Saratoga hospital.

…They were like, I think this is a seizure, but we don't have a pediatric neurologist. Albany Med did not have a pediatric neurologist. They wanted to give him medicine. They couldn't get an IV. They had to do an IV through his scalp. They were, I mean, it was going south extremely quickly. 

They asked about flying Jake to Boston but it was too windy. So they decided to send him there by ambulance. Heather would ride along and Brian would follow.

At a certain point, we had to divert to Bay State, which is in Springfield, Mass, just because they were concerned that things weren't looking great.  I think in that ambulance ride, I was more in shock. Because it was literally like now maybe it was like 5 in the morning. I don't even know. But it was like woken up at 2 because your baby's crying and then a shit show for lack of a better word. Like just this one thing after the other after the other. 

They got to Bay State where they kept them for a couple of days.

They treated him with Propofol, which at the time, I knew nothing about anything because I had two healthy kids and I was a healthy person. I just didn't live in a world where I knew things could go this wrong. 

We trusted the doctors and we were like, okay, sure. Like if that's what you think the best step is and they're like, yeah, we're gonna like rest his brain, kind of get everything to stop and then when we wake him back up, things should be better. He plummeted, he got much, much worse. I remember sort of at one point just being like, get the helicopter here, we are getting the hell out of here. Like I came in with a sick kid but an alert kid and now I have like I don't know what I have. We were scared he was going to die. So him and I get on the helicopter…We got to Boston Children's, and they took him in instantly. And I remember just standing there. It was like all these doctors. And I remember taking a breath and saying, OK, at least we're in the right spot.

While they saved his life, they definitely, like, there was no turning back. We don't know what caused that initial seizure. We never found that out…But what they did say … was that he had propofol intoxication. And basically, at Boston Children's, they would never, ever, ever have used Propofol on anybody under three.

Propofol may sound familiar. It’s typically used as a sedative or to induce anesthesia. A lethal dose of it killed Michael Jackson.

There's part of me that's like, I want to point a finger at that doctor. We made the decision, because people were like …there's lawsuits, and I was like… My energy cannot be in that. My energy has to be in advocating and taking care of my kid and keeping my kid alive, and that is my singular focus.

117 Days 

They stayed at Boston Children’s Hospital hoping the doctors would figure out what was wrong.

Brian was like, I am not leaving the hospital. I am going to be here every single night. I am not leaving Jake's side. That would not have been my strength, but I could remember, you know, at Boston, they went every two weeks, there would be these rotations. So it was kind of great because you'd get a new set of eyes, but it was also kind of frustrating because they'd be like, hey, let's try this. But my mind is the type that I'd be like, ‘okay, four weeks ago, we did that on so -and -so's rotation. This is what happened. No, we're not trying that again…’ 

A friend of the family put them up in a hotel and their life took on a new routine. 

I just remember like, get up, bring Ethan to daycare, get to the hospital, spend the time at the hospital, spend time with Jake, get home, you know, get to the hotel, order room service, hang out, like be a good mom to Ethan. He'd go to bed and I think I would sometimes then, like unleash a little, but it's like, I think I worried so much that if …I let myself have a moment to cry, I might never stop crying…I was on autopilot for a very long time and there were definitely moments and fights, like Brian and I would fight because we would both be like so stressed and not real fights, but just, you know, it had to come out sometimes…I didn't let myself stop because that was more scary to me that if I, frankly, if I started, would I be able to pick it back up and keep this train running?

Heather thought if they could just get a diagnosis they could take steps to get Jake well.

We would be like, so what's wrong with him? What's wrong with him? What's wrong with him? We were like... And I remember once, one of the attendings, … they would do these tests. And then we'd be like, okay, are the results back? Are the results back? And we would be really kind of disappointed every time that the test came back not showing anything…And one of the attendings...he was like, guys, the things we are testing for are horrible. Like, they are fatal... we don't know anything about them, and they're rare. Like, you need to flip it and be happy that these are coming back negative, because even though you want an answer, these are not the answers you want…So we became a little bit okay with that limbo.  

Heather’s perspective began to shift. 

I just had to see the world through such a different lens and I had to the things I thought were important just were not…Like, the things of like, what preschool is Ethan gonna go to? …It just didn't matter...when your life can change in like a blink of an eye… It was that day at the party. My friend Trish is holding Jake, and he is smiling, and he looks like, I mean, like the Gerber baby, right? Like, he just looks like he could have been a model and, like, perfect baby. And what, six hours later, he's fighting for his life? It's those moments where you just recognize that things are fragile.

It was around this time that Jake got a new roommate named Angel. Heather noticed Angel didn’t have many visitors

35 His parents would be there when they could. And meanwhile, there's Jake who had at least one parent with him 100 % of the time, most of the time, two parents, and sometimes, like aunts and uncles and grandparents, our unit was always there… And it became clear to me, Angel's parents loved him in the same way that we love Jake, this was not like a comparison ... It was circumstance. It was clearly that Brian worked for my family. He was still getting a paycheck. The priority was to be with Jake. Like, we had circumstances in place that allowed us to literally drop everything and be at our son's side, and that was a gift. Like, that was privilege. That really just changed the fabric of who I was and what I understood about the world and who I wanted to be in the world. 

Weeks passed, then a month. They spent Mother’s Day. Then Jake’s first birthday came and went.

It was like, okay, so when's he gonna be better? Okay, so when's the medicine gonna work? Like, okay, you think we're going home in like five days? And then it just became clear that that was not the case. Then we were starting to recognize that we were gonna be going home with a very different baby, like who had lost all his milestones, who was very sedated on medication, who could no longer eat by himself. Like, you know, they had put in a feeding tube…There was that idea that okay, you're gonna be bringing home a baby that's going to need early intervention and PT and OT and all of these things. And every time we would get closer, there would then be something like he'd get an ear infection. So then an ear infection would be 10 more days in the hospital.

Home

Finally the doctor suggested a stint in rehab before taking Jake home. Heather and Brian became hopeful that Jake could get back some of the strength he’d lost laying in a hospital bed. 

So we get to Spalding and they're not quite as harsh as this, but pretty harsh. They were kind of like, we can't help…So then Mama Bear and Papa Bear are like, we're ready to fight. We're like, ‘what do you mean?’ They're like, ‘we don't have that kind of capability here.’ So I'm like, ‘well, why are we here?’ And then I'm like yelling at Boston. I'm like, ‘why did you send us here?’ 

In the back and forth between rehab and Boston Children’s Jake got a fever. So they wound up staying another stretch.

Finally at one point like Brian and I were like we are leaving like we are done here. We will we will come back in one week if you need to see him like but we need to go home

After 117 days at Boston Children’s Heather, Brian, and Ethan finally took Jake home. But once they got there they had to adjust to a new way of living where physical therapists and occupational therapists were coming and going.

These people are in your home taking care of your kid. There's no way for them not to become close, you know? Ethan loved them, because Ethan would jump on their back and be like, hey, are they here for me or Jake? There were these moments of joy in all of it, a lot of joy in it, just surrounded by the circumstance that just sucked.

Jake slept with Heather and Brian, so they could keep a close eye on him.

We used to have this pull -out couch…And some nights, we just would open up that pull -out couch, and the four of us would just sleep on it. Ethan thought it was the best thing. He was like, family, sleep over! He thought it was great. It was hideously uncomfortable. Like it was not one of those like really nice pull -outs. It was like a bar like jamming you in the back. But it was just like, you know what? Here are our boys. They are safe. We are together. 

Recalibrating Hope

When you’re a parent taking a small child for checkups you’re handed a piece of paper listing the baby’s milestones they should be reaching month by month, year by year. By six months they should sit up, by eight months they’re crawling. 

Heather realized she was holding onto hope that Jake could regain the strength he needed to catch up.

The first month, I was kind of like, okay, you know, so we're gonna find a medicine that works. We've tried a bunch, they haven't worked, but we're gonna find the one that works and this is going to get better. It has to, how does it not? …You watch TV shows and they get better and things are, you know, like I just, what do you mean? There's this world where kids don't get better or where my son is not getting better. Like, I didn't understand. And that, I kind of went right back to that place when we went home because then I was like,...now he's home and we're a little bit more stable and he's just been laying down for 117 days. Like, he hasn't moved his body. Like, of course, like once we start doing PT and like everything will come back...I remember Brian and I would go on these walks, right? And we'd be like, ‘okay, so he's like a year now and he's not doing any of those things, but let's say by 18 months he can sit and then maybe by two years he can crawl.’ Like we would make up these timelines.

Heather became close friends with Jake’s PT.

And I remember asking that of the PT of being like, so, we're thinking 18 months, Jake will be sitting? And I remember once she was like, Heather, stop, just stop. Because she knew. She knew that was going on neurologically, what was happening…And I remember her just saying, like, you have to stop asking me that question. Like, I don't have an answer... I learned to look at the progress he was making. And no, it was not that he was holding his head up and sitting on his own. And no, it was not that he was crawling or saying, mama, or doing any of those things. But on some days, he was reacting to Ethan being a crazy boy around him. And on some days, he held his head up for a little bit. And on some days, he made eye contact with me. And I learned that those things were as big in some ways as the other things, because for Jake, they were big. He had to work hard for those things. And I just had to get over myself, really, and meet him where he was at.

Heather says that took the pressure off everyone including Jake.

He had to be in all these supports, but, like, with Karen, who is the PT, like coaching him and telling on, like he could move his foot forward, you know? And we, I remember going home that day from that therapy session and being in like tears, like so happy and so proud… It became just as important as the other things. And I learned that the other things, you know, it wasn't in his plan.

They learned there was a name for what they were feeling.

It's called ambiguous grief. I didn't know it had a name. But people would say to me then, like... And they would say to Brian, like, you know, you have to grieve the child you thought you were gonna have. And I was so offended by that, right? I was like, no, this is my boy... Now, I see and understand that and think it's hugely important.

Heather says there are different kinds of grief and she could grieve the life she thought she’d have.

It took us this time to sort of recognize, like, you know what? I am not going to have that vision that I always dreamed of, of like walking on the beach with a boy in each hand... That's going to be so fun and have the boys like running on the beach. And I had to come to terms that that was never, ever, ever going to happen.

Doctors advised against going on a plane so Heather had to get creative. Jake could handle three hours in the car so they went to Montreal, New York City, and Lake Placid. She learned there’s always a way to adapt.

I don't wanna say we perfected this life, but this was our life. We had accepted it, we were good at it, we advocated for him, we had a team of doctors that we liked. We had created a life that looked extremely different than we thought it was going to be, but it was so important and so valuable, and we just really loved it.

They lived like this for a couple years. Around the time Jake turned four, Heather and Brian started discussing getting a van that would accommodate a bigger wheelchair. His bones had become very fragile.

He was in bed, he moved, he broke his femur, started screaming bloody murder. We were like, what happened? Don't understand. We ended up, we took him to Albany Med. They did an x -ray.  I called his orthopedist at Mass General. He was like, ‘bring him down right now.’ Took him in, did the surgery himself.

Jake wound up in what they call a spica cast that wrapped around part of his torso and legs. 

Ethan calls 911

A couple weeks later on December 8, 2010, Brian was at a meeting. Their helper Kate came over to read to Jake, while Heather walked Ethan home from school.

Kate walked out, and then she came back and gave him a kiss. She's like, ‘I can't believe I almost left without giving you a kiss.’ I made Ethan and me dinner. That night, I was feeding Jake. I was giving him his meds and starting to feed him at the same time as we were eating. Ethan thought it was the best thing ever because we were eating in front of the TV. Brian was on his way home from this meeting, and all of a sudden, Jake just started to...it wasn't like throw up, but he just started to like, I don't know what it was, but I instantly knew that it was not okay. I screamed at Ethan. I was like, ‘Ethan, call 911,’ five years old. Ethan runs into the kitchen, dials 911 like dropped the phone and ran back in…Within minutes, our house was filled with the firefighters and the police and the EMTs and everything. And I called Brian. So meanwhile, he's in a cast. They don't even know what that is. They're like, what is this? And I'm like, my god. I was like, no one is equipped right now to handle this. I called Brian, and I said to him, I said, I think Jake just died. 

I got to the hospital, I'm running in, and at the time, one of Ethan's good friends' father was an ER doctor, and it was him. So he was like, ‘let her in here,’ like he was screaming at them…so I ran in, and I remember saying, I was like, ‘but he's on the ketogenic diet, he can't have saline.’ And he just looked at me and was like. Like, he couldn't have normal saline, because there's a little sugar in it. And he just looked at me and was like, ‘Heather, we are going to do everything we can. We're not going to worry about the ketogenic diet.’ And I remember being like, ‘OK.’ And then, sort of just being like, what is happening? Like, what is happening? Then Brian came in. And then, the priest came. And as soon as the priest came in, I was like, this is not, you know, this isn't great. I remember hugging Brian. I remember screaming. I remember just being to Brian, like, how are we leaving him here? Like, how? Like, how does this happen? And I remember Brian kind of being like I went to work this morning and it was fine, you know? And I say it all the time. I'm sort of like, it was just a Wednesday. Like, it was just a regular Wednesday.

It's funny, you talk about these moments, right? And to me, the big moment is when he got sick, because that's when I'd have really changed everything. But this is that moment that has changed me in the way that. Every decision I make is wrapped in this, to some degree, right? And I have to be so conscious about so much that I do, about how I parent Ethan, about how I'm a wife, about how I'm a friend, because when you live in this world where  someone can be alive one minute and not, and you can watch them, and you are the person responsible for them, it is just it's so terrifying to even live.

Heather went into planning mode, trying to keep herself busy. Just kitty corner from their house sat a funeral home so she and Brian walked over.

And Roland was the funeral director at the time…And one of the things he did was that, ‘OK, when Jake's back, bring over his favorite cozy clothes. We're just going to have him dressed, and we're going to have him here. And we're going to leave that back door open and anytime you guys need to,’ because we were sort of like, let's just do this quick. And he was like, no, you need a couple days. You don't even understand what happened yet. Because he died on a Wednesday, and I was kind of like, wake Friday, funeral Saturday. And he was like, no, let's do like Monday, Tuesday. And we were like, OK, but didn't really know. And so basically, he set it up so that Jake was in a room, super comfortable, in his cozy favorite outfit, and we could come and see him. Anytime, that like Thursday, Friday, Saturday, Sunday. And at first, I was like, yeah, no, we're not gonna do that. But when I tell you that I'd wake up at 2 in the morning and I'd grab a blanket and go across the street and sit with him, and my husband would, and Ethan would, and we would just sit there and we'd have lunch and have sandwiches, and we sat there and we spent... And that is when... That is when we said our goodbyes. 

It was spending time together. It was seeing that visual of just like having to accept it that if we did not have that time, I'm not sure. Like if we had done what we had wanted, which was just like, knock this out, I think I would be to this day, like a mess. Like, I don't think I still would be able to process it. But those days, and I would sit there, and I would talk to him, and I had started this thing where I wrote letters to him that fall… I was like, you know what, Jakey, I'm gonna start writing you letters. So I called them letters to Jakey.

LAUREL:I'm curious how Ethan grieved. Like, how does a five -year -old deal with this?

HEATHER: ... I don't know if we were good parents or bad parents, right? Like, I don't know. Like, we sent him to school that Thursday. We sent him to kindergarten. Like, we came home. Like, he called 911 Wednesday night. We came home without his brother, and then we sent him to school. Like, we walked him over to school and talked to his teacher and the school psychologist, but I also knew that I was a disaster. I was standing in my living room screaming. I knew that he'd be safe there. And we needed to get our shit together a little bit. And he didn't need to see that. People are calling. People are showing up. His kindergarten teacher who we adored lost a sibling when she was a child. And wow, right? And she was, I would say, instrumental in his grieving process. She would say, like, hey, you know, is it OK if I keep Ethan after school? We're just going to do some pictures.

Sometimes, I'd be putting him to bed, and he'd know I'd be sad or something. And he'd be like, ‘Mom, he's right there. He's like right there.’ And I'm like, ‘where?’ He's like, ‘in the corner up by the ceiling.’ And I'm like, ‘hey, Jake.’ But he would see him. 

I will say that when Ethan wrote his college essay, he wrote about calling 911. That was his opening line…when all my friends were going to watch their brother's baseball game, I was going with him to PT. And it made me realize that there was a lot more there than maybe I had thought about or given him space for. 

LAUREL: How has your grief evolved?

HEATHER: So in the beginning, I think it's safe to say that I was really angry, right? Like, I lived in anger for quite some time. It would come out in some of my letters to Jake. It took me a long time to not be so angry. I've seen people who've been utterly devastated and ripped apart because their dog died. Heather, five years ago, would have been like, eye roll zero sympathy.  Now I feel like I have evolved in sort of, not this hierarchy of grief, that just grief is all-encompassing and we all experience it and if we haven't, we will.

It was then that she started to embrace the lessons Jake taught her.

Since I can't have him back, I'm happy that he has put me on this path to be a kinder, gentler version of myself, and to be comfortable in talking about my grief, and to be comfortable to sit side by side with it, and to potentially use it to help other people.

They started a foundation called Jake’s Help from Heaven.

We wanted a thing that was done in honor of him and because of him. And we started it because we wanted to help families like ours. We honestly wanted to help families like Angel. We have navigated this world. Okay, and it's a really hard world to navigate, and if we can help ease that burden a little bit and talk about our son and help people like our son. And when insurance doesn't cover something. If you apply to us, we can help you. We can give you a hotel stipend and we can give you a food stipend and we can cover your gas to get there or your plane ticket to get there. 

LAUREL: What do you want people to know?

HEATHER: I want people to know that because people look differently than you, or because people have different skill sets or life experiences... I think of Jake and I think of how, had he’d be 17 right now, how would the world treat him 1:36:30 we know very little about other people's journeys.

This is 2 Lives. I’m Laurel Morales.