In this episode of A Place of Yes, Heather sits down with Francine Apy, an experienced adoption coach and adoptive mother of three. Francine shares her journey of normalizing adoption within her family and the importance of keeping open conversations about adoption, even when it involves addressing taboo topics.

Dive into the concept of ambiguous grief and how it affects adoptive families. Join us for a discussion filled with insights, empathy, and practical advice for anyone touched by adoption.

Find Francine & Soul Filling: http://soulfillingadoption.com

 

FIND HEATHER & JAKE’S HELP FROM HEAVEN

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FIND HEATHER & JAKE’S HELP FROM HEAVEN ⬇️

❤️ Heather’s Instagram: https://www.instagram.com/heathersstraughter/

❤️ Jake’s Help from Heaven: https://jakeshelpfromheaven.org/

❤️ Jake’s Help from Heaven IG: https://www.instagram.com/jakeshelp/

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Keep scrolling for the episode transcript.

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

Daniel DeFabio 0:04
Throughout his life, that wheelchair was never a thing I resented it was a was an enabling piece of equipment that made our lives possible in his best life possible. So I was all happy with it. And I found myself after he died, I didn’t want to look at that thing that was a triggering problematic thing. So to even deal with, you don’t want to throw it away. It’s valuable. Somebody needs it, dealing with where to put it. And then finally, I thought about you and called you and you said, yeah, we’ll take it.

Heather Straughter 0:28
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. I am very excited to be here today. But before we get started, I feel like I should give a little bit of a warning to the audience. And to you, Daniel, my voice is really a little off today. I just sound a little bit wonky. So I just want to let everyone know. So I apologize in advance if you can’t understand everything I’m saying. But I’m sitting here with Daniel de Fabio. And there’s this great story about how we’ve reconnected I should say we have known each other through the work of Jacob from heaven. But most recently, I was reading a book by a mutual friend and a previous guest on a place of Yes, Jessica fine. And in her book, breathtaking. All of a sudden, she’s talking about Daniel de Fabio. And in my head, I was like, you know, it’s not like a John Smith name. It’s it stands out a little. And I was like, could it be? Could it be the same. So I reached out and in fact, was the same. So I love the way the way our worlds intersect, and the way that the rare disease, the grief world, all of that is becoming so much smaller. So before we get into all of those things we could talk about, I want to give you a more like formal introduction, you are the director of community engagement at global genes. Right. And you are the co founder of the disorder channel. And you are very involved with the rare disease Film Festival, potentially even the founder, yes, co founder. So can you talk a little bit about that work?

Daniel DeFabio 2:00
Yeah, it was all an outgrowth, you know, having a child with complex medical needs will change your life. And eventually I felt the need to talk about it or write about it. So as a blog post first, and when that sort of landed with some people that it wasn’t just me venting, I realized it might do some good in the world. Then I thought I had a background in film. So maybe I should make a film. And so I made the documentary about monkeys disease, and like you said, these communities are so small, my son had monkeys disease, who else was going to do it? There’s about 100 people in the world that are dealing with monkeys disease, and what’s the overlap of people with film skills plus monkeys? The so it really had to be me. And then having made that, what do you do with it? So eventually, it did some film festivals, and it did some medical conferences. And then I thought I previously created the Ballston spa Film Festival. I said, I could create a film festival about rare diseases. And with bobek la that’s what we did. And we did it in Boston. That’s where we met Jesse fine. And then two years later, we did it in San Francisco. And then we thought we’d do it in New York City in 2020. In May, not gonna happen. It was the worst time together, I made vulnerable medical populations into a movie theater in the middle of COVID was terrible. But that led to what can we do instead, which the instead was you could have a virtual Film Festival, we didn’t quite like that idea. So we had a streaming channel, which is the disorder channel, and it’s available on Amazon Fire TV devices. So

Heather Straughter 3:17
let’s go back to how we met. That’s kind of the root of the rest of our conversation. So talk to me about your son, Lucas.

Daniel DeFabio 3:24
Yeah, he was our first child. And right off the bat, there was something wrong but not unusual, super unusual, but it was a fracture at the occipital base of the skull. And so they’re very nervous is their brain bleeding, whatever. So we were in NICU with him for the first 10 days, this will be relevant to the Jake’s story to we needed to stay at the Ronald McDonald House down at Albany med. So our world is changing, you know, and we overnight Yeah. And we both my wife and I had, I guess enough privilege in our life that we never needed any charity. And here we are, like, can you take us into the you’re in at Christmas time? This is us born December 25. Oh, okay. So we spent Christmas at the Ronald McDonald House which I went into thinking it’s gonna be the most depressing thing in the world. And it was actually the most joyous, uplifting amazing the work they do is unreal, life affirming. It was amazing. Eventually everybody checks out Lucas to their satisfaction, including neurology and they say he’ll he’ll, this is we can’t explain it. It’s a strange fracture, but he seems to be okay stabilizing. You think you’re on your like path to normal child rearing. And with the first child, you don’t actually know anything? It took a while until aged nine months, we saw little bits of missing milestones. We thought, well, maybe this is because he’s still healing from the fracture or he was two weeks early, maybe it’s about that. And then nine months, he not only wasn’t keeping up to milestones, but he regressed and somebody said you need to go see a geneticist. And luckily here in small ish Albany, New York, the geneticist actually seen somebody with monkey syndrome before

Heather Straughter 4:53
Okay, so I didn’t know that you were still at all me for I was I was wondering if you had made it to like 10 or something. Okay, so all of these and they diagnosed them. Yeah.

Daniel DeFabio 4:59
So He had actually had two other patients, I got to know those families because it’s a small world if it had not been for that he might not have known how to diagnose Lucas. But so you’ve probably heard enough stories. Now people go, Well, your own story, you go on these really long diagnostic journeys sometimes, and it takes forever to get an answer, if you do, usually seven years is typical. In our case, it was a few months, you don’t want bad news. But I guess you’d rather want bad news faster than slower. It’s

Heather Straughter 5:24
such an interesting thing. And it’s something that I’ve talked about quite a bit, because, you know, I sit here and listen to you get a diagnosis that quick. And all of these years laters I’m still gonna say it’s a weird thing to say, but I’m jealous. Like, it’s a name. When you talk about that journey. For those who don’t know, with at least with Jake, they were testing for all of these things. And some of these things were, you know, there’s one person in Asia that has something similar, you know, so they’re testing for things that there’s they can count on one hand, who has these diagnoses? And I remember Brian and I are getting very frustrated being like, What do you mean? Like, we’re at Boston Children’s? How can you not figure out what’s wrong with my kid? And I remember when Dr. And I, and I’ve said this before, but they have, they were like, sometimes it’s better to not know, than to know, because everything we’re testing for, like none of it’s good news. And it was funny, because at that time, it sort of was like, Okay, let me focus on something else that like it made me not like per separate so much on like, once you have once you have it never fill that hole, like still all these times. And it’s always hard because people say, Well, what’s wrong with them? And I never can say it to have a name of a disease. There is something kind of validating.

Daniel DeFabio 6:28
Yeah, and I would say those doctors are wrong. It’s a very doctorly. But if there’s nothing we can do about it, why would you even want to know what it is? Well, here’s why. Because I might start a foundation and I might go find the cure myself. No, you can’t do it until you get the till you genetic result or the name of the disease and then you start to gather your people and figure out what

Heather Straughter 6:47
other people that answer reminds me of a lot of another guests but another Jake’s family, Hillary, as Mays mom finally got this diagnosis. Once they figured that out, it was really life changing for them. And you know, she became involved in another foundation and she found all these other kids and all these other families all over the world. And there was just something in that that was such a big pivot monkeys. I remember reading in something I think that you had written or that was written about you about how the first 10 days are pivotal and how frustrating that must be that the first 10 days of Lucas’s life he was in the hospital for something else and they didn’t know so

Daniel DeFabio 7:24
we were in the right place the right time with all the right people looking and in one sense, no doctor is going to know all the rare diseases so what are the chances but we were seen by neurology and they were probably best suited to know something like that. Unlike so many rare diseases where as we just mentioned, the doctor will say well there’s nothing we can do about this disease. There is something you can do about monkeys disease if you treat it in the first 10 days of life and we missed that window we he was not diagnosed till a year later how frustrating and they still offered us the treatment as an experimental you know compassionate use protocol thing but maybe it did some good but it didn’t do the good we know it can do so what does it do does is it a cure? Or is it a slowing it’s so dramatically reduces the symptoms that you might not notice them? Oh, wow. Okay, so nificant kids without treatment like Lucas will not walk, talk sit unassisted, eat unassisted even communicate in other ways other than weak sort of gait, you can you can tell Yeah, with the treatment in time, you might walk with a slight change in your gait, and you’ll have some additional pains and things that other people don’t have. But to the outsider, you know, you watch them finish high school and play sports and have hobbies and talk to their friends. And you know, maybe they live a little shorter lifespan but they live the pretty not I hate to use the word normal but typical range of human experiences available to that.

Heather Straughter 8:42
How do you come to terms with that? It’s gotta be hard.

Daniel DeFabio 8:44
It is hard we look at it as we did everything we could we did it when we could you know, any of this grief stuff when you’re looking back? Hopefully you don’t have a lot of what is should occur is regrets because that comes from knowing what you know now and thinking you would have known it then but you wouldn’t have known it then. So

Heather Straughter 9:01
and if you knew it, then you would have done it, you know? Yeah. 100% And I do think that is a key part of the grief journey, right? Is that you you have to come to terms with everything that happened and I hate the whole like it happens for a reason kind of BS out there but there’s an element of that that you sort of have to you have to you know, you have to feel okay that you did what you could with what you had at that time you know if the mean now was Jake’s mom then it would just be such a different world but that’s not the way the world works.

Daniel DeFabio 9:30
You probably feel like you did I think I did gain some superpowers along the way wouldn’t have been nice to have them at the beginning. That’s not the way it works.

Heather Straughter 9:35
And I talked about this with a lot of families right like that ability that that you learn over time when you have a child with a real significant illness or this way or these very rare diseases you have to be there everything you have to be their voice you have to be their advocate you have to not take no for an answer you know I mean like you have to really fight for them at some point I think it switches are in it certainly switch for me where you figure out it’s okay to question doctors. Yeah, they’re doing the St. Ken, but hey, you just wanted to put my kid on the same medicine, you already put him on and it didn’t work, then it’s not gonna work. Now let’s move on. That to me wasn’t natural. I learned that over time. Yeah,

Daniel DeFabio 10:08
absolutely. That’s one of the many sort of rude awakenings we have in this journey is that to the extent we could argue forever if our medical system works, but to the extent it works, it works for the typical and the mainstream and the common. And then when we fall outside of those parameters, most doctors don’t know what to do. And then we have been raised to think we ask the doctor, and they tell you, or maybe you ask for a second opinion, but that might be rude.

Heather Straughter 10:31
Yeah, you don’t wanna hurt their feelings? Well, now, they’re mad at us, and they won’t take care of him at all. Yeah.

Daniel DeFabio 10:35
And now suddenly, we’re in the world of this doctor might admit it or might not admit they don’t know. And not only in my second opinion, but third, fourth, fifth, sixth, and all of them might not know. And then finally they say, oh, there’s a doctor in Helsinki that might have studied something like this, once you’re like, What am I doing? So yeah, you do have to reset your expectations of the whole medical system? Because it’s not built for us. It’s

Heather Straughter 11:00
not it’s I mean, that’s absolutely true. One of the things you said made me think of a geneticist that we worked with at the end of Jake’s life. So in the beginning, there was just, you know, when he was first sick, he had his first seizure at eight months. During that time, when like Boston Children’s, they were all trying to figure out what started at what happened, how do you take a previously healthy eight month old and have this happen? Once we acclimate it to his life, you know, and we had kind of moved doctors over to like Mass General, we found this geneticist who was revolutionary, in my opinion, her bedside manner was a little rough. But she also was committed, I do think if he didn’t pass, when he did, we would have ended up with a diagnosis because she was like, dog on a bone, you know, she was just trying to figure it out. And the phone would ring sometimes like Sunday at 9pm. And she’d be like, I’m gonna send you the script, get it to your doctor, because I need this test done. Because I’m going to try and do this. And he had a few doctors like that, who just were the exception to the rule.

Daniel DeFabio 11:49
Because if only we ended up one of our specialists was of all the many symptoms affected by monkeys disease, this would have been like low on the list, but because he had the best bedside manner, and he really engaged with us and cared about Lucas, he became our lead. Like, why is this guy going to trust me? Just do what he says? Yeah, just

Heather Straughter 12:07
just follow it. Yeah, we’d like him. I want to talk about one more thing. So our paths crossed, you know, through Jake’s help from heaven? How did you even find out about us? That’s always one of my questions. When I talk with families to it

Daniel DeFabio 12:16
was our case manager for Okay, probably know better than I do what all the different agencies are named, but one of them that, you know, they also bounce around. Yeah, they change all the time to you. So we were up against a couple of medical expenses. And I think the bed was the first one, right. And the bed was a ridiculous example of how this system doesn’t work, right? Why medical equipment is so expensive. And if it’s specialized, it’s even worse. And so I think what happened, we qualified for a more advanced bed, a hospital bed in the home, and they would have paid for that. But it was too bulky and big for our lives. And we said, well, this is a smaller model. And that’s what we want. Well, we won’t pay for it. And then the caseworker said, you know, Jake’s for help from Heaven might handle that for you. And you did. And it was amazing. And following up on the Ronald McDonald House story, it was this weird adjustment in our lives of We are the ones who need charity. And we did, and you did it. That

Heather Straughter 13:07
whole idea of our health care system, the way that works to me is so outrageous, right? Like, we will buy you this $12,000 bed, but we won’t buy you a $4,000 better, you know, and I’m kind of making up those numbers, but they’re about where it is. And it makes no sense. There’s countless stories like that,

Daniel DeFabio 13:23
you know, another example like that they would have paid I think $7,000 For the Dynavox communication device. But an iPad at the time was relatively new, but still would have done the same job for 700. Yes. And they wouldn’t,

Heather Straughter 13:35
they won’t do that. They still don’t. It’s bizarre. It’s 100% why we started the organization because once Jake passed, you know, this feeling right? Like you What are you going to do what you have something to do a you’ve got more time, because your number one time, you know, like Jake was 24/7 care. So you were it was just there was no time other than taking care of him really, you have this time, but also, at least me it’s kind of become my life’s journey of just kind of keeping his memory alive. And what can I do? And how does my story help anyone else? And how can we share and we have this very small world that we’re in, there’s not a ton of people in this world. And not necessarily like the lost world but but the sick kid world of and trying to figure that out and trying to have a quote unquote, normal life. When you have a child with significant needs. There is no end in sight of the costs. And it doesn’t matter really how if you make a good living or you don’t because it’s just so different. And someone had said that to us when Jake, when we first came home with Jake being really sick and where I was like, No, I’m not applying for any grants. I’m not doing that. Like we’re good. We don’t need to, but they kind of made it so clear to us. And those examples are always the ones I go to because it’s not like you could go buy a bed for Lucas at Target or Walmart or TAFs furniture like whatever Right? Like you need something specific. And then the people who are supposed to help you are just making it so hard. We know this world like this is our people. This is our world. We’re comfortable here and how can we provide service to other people like us other families like ours? And

Daniel DeFabio 15:00
then just a little context detail on the bed in particular for us, Lucas had a bedroom upstairs, but he was getting so big and he’s got to be slung over your shoulder. And we’re in an old Victorian house and go up the narrow stairs to go upstairs and you hurt your back while you’re getting them onto the bed. So we decided he needed a first floor bedroom. And that was the dining room, the dining room became his bedroom, and then that you needed the hospital bed because it could raise and lower him, which would make it which helps. Yeah, when they asked us like, What qualifications do you need in your nurse and like, if she couldn’t lift 40 pounds, we’re good. Over the years, he’s not 40 pounds anymore. And she’s struggling, she’s hurting her shoulders and stuff.

Heather Straughter 15:34
And then I was trying to think if we did anything else with you guys,

Daniel DeFabio 15:38
so Lucas died, and it was COVID Time 2020 22, June of 2020. Among your many to dues is what can we repurpose here? What can we give equipment away, and you guys do that kind of thing. But nobody would take his wheelchair, it was so frustrating me for a while was in our back shed and out of sight out of mind. But throughout his life, that wheelchair was never a thing I resented it was a it was an enabling piece of equipment that made our lives possible in his best life possible. So I was all happy with it. And I found myself after he died, like I didn’t want to look at that thing. That was it was triggering a problematic thing. So to even deal with, you don’t want to throw it away. It’s valuable. Somebody needs it, dealing with where to put it. And then finally, I thought about you and called you and you said yeah, we’ll take it, we’ll take it. And that was just such a relief to know that probably it went to somebody that it’s the

Heather Straughter 16:23
exact reason why we have that equipment exchange program. 100% When When Jake passed, we had a lot of stuff. It’s funny what you said about the wheelchair because we never thought of the wheelchair as like a confining thing either. And honestly, one of our first guests talked about her daughter CeCe in her wheelchair, and she’s like people say it’s so confining, she’s like, No, this wheelchair gives her freedom, like this wheelchair gives her the ability to see things that otherwise she couldn’t. And that’s kind of how we always thought about it, too. We thought about these various things as as just vehicles in which we could transport him and take him to see everything so that he wasn’t just stuck. But we had all this equipment and some things I could keep in my house like some things I still have in my house, because the memories are pure joy. Other things I couldn’t look at, I just couldn’t like his stand or I couldn’t look at it. Like I could not have it in my house at all. Like it just made me sad. So that’s basically when we started the equipment exchange because some stuff I could get rid of like one of his chairs I donated to prospect, it’s often a service when we lose someone where we say like in our Jake’s family, that it’s something like that we can do to kind of for that exact reason. When Lucas past Did you know it was coming? So in

Daniel DeFabio 17:33
one sense, we knew it was coming for 10 years? Because they tell you there’s a prognosis here of three to 10 years? And how much of an outlier you’re going to be. Yeah, but we did know that he had his symptoms compared to other boys that it’s almost always boys that have monkeys. And compared to the other ones we’d met. He seemed to have milder symptoms in some ways. When he did die at 11 and a half, I suppose he beat the odds, right? So we got a little extra time with him. But how it more immediately played out was that December, we were in the hospital with them. And the same specialists that we tend to like the most said, the hard conversation. He said, you’re probably looking at months, not years, you think to yourself, how many months but despite all the rational information you have you if you’re at all optimistic, you go well, nine months 1011 12 I wouldn’t get better than that wouldn’t be 12 months, because he would have said Yeah, so it says 11 Yeah, 11. Right. What do you know, it was it was six months after he told us that. And so that’s right down the middle of months, not years. So we we had that warning, but it didn’t matter. You know, you don’t believe the warning. Really, the illness that brought him into the hospital for the last time didn’t necessarily feel worse than all the other illnesses. You know, every time you’re you’re wondering, are we going to make it out of the hospital all the other times you did fighting to get out of the hospital, you know, we’ll prove that we’re good enough. We’re gonna go home, and then you feel a little foolish if you’re wrong. And the last time we were wrong,

Heather Straughter 18:55
but it’s hard because you do want to get out of the hospital, there’s disease in the hospital, there’s germs in the hospital, there’s all of that. And sometimes we would find you get into this cycle. And one of the reasons we we eventually made the switch from like Boston Children’s to Mass General, but we ended up as we slowly moved to Mass General, they had a little bit of like a different philosophy, at least back then they did so like Jake had to have like double hip surgery. And at Boston Children’s if he had done it there, the he would not have been able to have been discharged would have been like 10 to 12 days afterwards, because he would have to have met all of these milestones. And some of those things. I was like it is going to take Jake a very long time to get to any of those. Whereas at Mass General they sort of saw that and they saw Brian and I were somewhat capable of being able to take care of him and if we could get him out of there like I was like I’ll come back every three days if you want to check on him like we can figure that out having this like arbitrary checklist of things he’s going to have to do before we can go home means we’re going to be here forever.

Daniel DeFabio 19:54
Yeah, it was way late in the game when I got smart enough to like keep baseline records and say Yeah, his oxygens low but it’s oxygens always low, exactly those type of let’s talk about his normal,

Heather Straughter 20:04
you’re not your little checklist because your checklists like we might as well just move it. Like we’re all you got the whole stronger family now yeah, you learn

Daniel DeFabio 20:11
that one the hard way, every time was like we’d let you go home, but his oxygens not high enough. You know, I

Heather Straughter 20:16
used to talk about the loss of your child, right like, and I used to believe very strongly, there was like a hierarchy of grief, and that our grief was the worst. And there is part of me that still feels that way. There’s also part of me that has evolved a little bit and recognizes all these different kinds of grief, right, and all of these different losses. And one of the things that I’ve heard you talk about, and I talked about, with Jessica, and I’ve actually talked about with a couple other guests is this whole concept of ambiguous grief and anticipatory grief, they’re obviously not new, but they’re relatively new to me. And it’s a little bit like when we talked about like, when you have a name for something invalidates it, I do find so much good out of these kinds of terms. Because grief in itself is lonely, I think you don’t want to make people upset. So you don’t want to talk about it. But if we don’t talk about it, then people are always going to be uncomfortable about it. And not that it’s our job to make people comfortable. But we’re better when we share I think and everybody experiences grief, not everyone experiences the loss of a child, but everybody experiences grief of some sort, very

Daniel DeFabio 21:21
similar to when you don’t have the disease name to research or to find the support for that’s for your, your person, your patient, your son, child, but for you, you also need a name for it. And it’s grief. And you might not know it’s great, especially if there’s no diagnosis, prognosis that says death is imminent. You might not know ambiguous, or anticipatory grief are things and when I were at a local support group, and somebody said, Well, what this is, is grief. Oh, well, now I know what to call it. Now. I know what books to read.

Heather Straughter 21:53
I know what research, like a chapter yeah, like I like, yeah, and you’re

Daniel DeFabio 21:57
right, there’s so many subtypes. And there’s compound grief, and there’s in they’re all useful distinctions, because outside of this circle of awareness, would get what’s wrong with you, the parents, if the child is not dying, you can’t be grieving. But that’s not true. It makes

Heather Straughter 22:13
it less isolating. Right? In the beginning, I was like, Well, I can only connect to people who’ve had this huge loss that I’ve had. But the fact is no, you can connect with anybody over loss. The ambiguous grief to me is so impactful in terms of, of connecting with other people, you know, I remember early on someone was like, Well, you have to grieve the child the thought you were going to have, and my immediate response was kind of angry because I was like, no, like, Jason enough. Like, I’m, I’m okay with the fact that this is not, but I wasn’t, you know, I had a life that I thought, you know, especially he was my second and you know, you referenced earlier, like, when you have your first kid, you don’t know what you’re doing. We just, we did it once we could do it again, to lose that, you know, there was grief there.

Daniel DeFabio 22:55
Yeah. And when you say the life you thought you would have with your child, you forget how much of that you’re taking for granted. Oh, of course, he’ll go to school, of course, we’ll graduate, of course, go to prom, of course, we’ll get a job. And all those of courses start getting crossed off the list. And

Heather Straughter 23:10
that realization that it’s not just delayed, it’s just not going to happen. Right? Yeah.

Daniel DeFabio 23:14
Right? To get into the very sub genre of grief, compound grief, we were told Lucas would never talk well, you wrap your head around that eventually. And you maybe make your peace with it. But then he goes to the special needs school program, and they’re trying to do different communication techniques. And those aren’t really happening, the eye gaze and the pecs cards and those things. And so you just get this next blow and the next blow and like, not that either, not that either. It’s terrible to say because despite all that, there’s still joys, you know, there’s still good things, you have to let go of those expectations to get to the joy. Exactly. Yeah. You can’t appreciate the joys if you’re hung up on what you wanted, two years ago, or four years ago, or that

Heather Straughter 23:50
is I mean, you almost gave me chills with that. Because it is it’s so easy to get in that like what they can’t do or what they won’t do.

Daniel DeFabio 23:58
Yeah. And again, if he didn’t let go of the previous expectation, then the then everything’s a comparison. Like, oh, my kid didn’t write an award winning poem. So how am I gonna appreciate the fact that I was able to scribble Well, in Lucas’s life that day that he scribbled was that was a breakthrough landmark day. Yeah, I see the joy in his face that he knows he’s doing something cool. And

Heather Straughter 24:22
something that he hadn’t done before. That’s so let’s before we go on to like what you’re doing with global genes, and more specifically, and I love the story about Lucas that you just mentioned, scribbling tell me more about Lucas is like day to day and what life was like with him and yeah,

Daniel DeFabio 24:36
it was interesting. One of those expectations that I couldn’t get my head around was, I would in the first two years we’d taken my mom’s and she beat daycare for till he was ready for school, but we didn’t know if he would be ready for school and I on my route home from my mom’s to my house with I’m stuck behind a school bus and it was a nightmare, because every stop I’m looking at cute little kids getting on a bus and I’m thinking he’s never going Gotta get on the bus. And then you know, each five What do you know, surprise, there’s a special short bus that pulls up and it’s got the lift in the back, like roll his wheelchair, and he does go to school. And this is one of my favorite stories. It’s not true, but it’s it happened. It’s just Alright, so the kid Lucas gets on the bus and a kid yells Lou keys here and he brought popcorn. Now the part that’s not true is Lucas did not bring. I don’t know why the kids said it. But what mattered to me was that some someone valued Lucas as a friend and a schoolmate and all that context, you know, broke my heart wide open. We hear back from school, they tell us his progress and stuff. And we always wondered, like, are they kind of overestimating him? We don’t see that at home, how they get all these great results at school. There’s a toy if you had a big enough switch, he could hit a big little switch so he could activate this toy that would shoot out across the floor, I think was an alligator and he’d lie in wait, obviously, the teacher has to help them. But he’d wait for other friends to walk by or teachers to walk by and he’d launched the alligator at him when he crackup. That’s awesome. Like a little devil. And we knew that mischievous nature because at home if you if you bumped your head on a cabinet or hit your thumb with a hammer, he’d laugh his head off. And that actually kind of helped you realize like, this is my hang up now. Yeah, I don’t have to be that upset about the phone. Yeah, you’re like, Yeah, I’m okay. But this other report came home from school that said, Lucas really comforted a friend today. And I thought, come on, what does that mean? A year. You’re overselling this, this isn’t what happened. And then the other moms sent me the photo of of what that moment was, and there’s this boy, maybe seizing but in distress and almost fetal position, next to Lucas and Lucas, who can barely control his limbs holds that boy’s hand and he’s smiling and proud of himself, and he’s looking at his friend. And then Becca is the mom and she’s amazing. When Lucas died, she sent me that photo. Oh, on a rock with friends written on it. I saw the friends logo, font,

Heather Straughter 27:04
ah, I love all of those stories. Like that’s the joy, right? Like that is the moments when people don’t know and they don’t think that can happen. But that happens. You reminded me of Jake winter prospects well, and we brought him up and I wheeled him in one morning, and this little boy, and he was like in a was a special needs classroom. But it was a full range of sort of needs. But this little boy ran up and goes, JJ is here. Now no one ever called them JJ, like, I don’t know. But like, he was just legitimately excited. And the teacher was like, JJ is his best friend. And I remember that feeling of like, Jake, he’s got a best friend. Like, you know, it’s just because those are things I didn’t know to grieve. But I had there was like, a hole in my heart, right? Like, my kids never gonna have a friend not gonna know. And then in their own way they do.

Daniel DeFabio 27:53
Here’s another. So we have a younger son two years younger than Lucas. And just today, yesterday, for the first time, he started volunteering in that classroom. And the same boy Hunter is now 16. I don’t know if my other son had much to do with Hunter, but he’s in that room with Hunter. Oh, I love that. Yeah, those windows into their school life, because you probably feel like you want to be there and you can’t be there. And you got to trust that everything’s gonna get a while they’re there. And then another note, we got home from school. It was written by a first grader you could tell in Korean and stuff and it said, no one is allowed to touch him, or any part of him, even his hands except Mrs. Green’s class. And it just so loaded so many layers. There are a lot of people clamoring to touch Lucas, is that what’s

Heather Straughter 28:41
necessary? What’s happening? How

Daniel DeFabio 28:43
did we get here? Yeah. It was very territory. Like he’s like, Yeah, which is wonderful. Right? Like, very sweet.

Heather Straughter 28:50
Yeah. It gives me such faith in humanity, where sometimes it’s hard to have that but these stories, right of like, the impact that our kids had, just by being themselves, right, and in the way that other kids are good.

Daniel DeFabio 29:03
Yeah. And I don’t know if I chose to see more of it. Or we got lucky and we experienced more of it. But I think mostly we saw the best of people brought out being we’re walking along with a kid in a wheelchair. That’s obviously not as healthy as most and best of everybody came at us and now I feel like without Lucas I’m in this I’m back in the default world of like, how can the person on the street doesn’t smile at me? Why aren’t they like fussing over my existence here? Oh, because I don’t have the cute kid happy kid. Yeah,

Heather Straughter 29:34
so one of the things I think that comes up a lot is especially or at least for me 13 years out on this journey right? I focus a lot on the good stories and stuff I can sometimes bring myself right back to those feelings of not greatness, right of like anger and disappointment and rage even right like those feelings of just why me for me a lot of that would wrap around the sort of like on diagnosis because I’m like a fixer Right. Like I want to be able to fix it. means that you’re not letting me have the tools of which I can fix and just anger like, is it me? Or did you also have people like

Daniel DeFabio 30:06
me, with a few years of experience can do a disservice of talking from the vantage point of now where you’ve learned a few things, and you’ve dealt with a few and built up some coping mechanisms. That’s not to say it was easy, and it was never difficult. There are times when exhaustion was like the default state all the time. And we found I think, my wife too, we found ourselves at the breaking point, we could maintain there for a while. But one little thing would be the straw that breaks the camel’s back and send you stupid stuff like the basement flooded, most people can handle that. But it might be the thing that puts us into a tailspin, or the car got a flat tire with every

Heather Straughter 30:45
year. Yeah, yeah. When you’re away all the time, you’re already

Daniel DeFabio 30:49
maxed out other things. You know, I wrote a piece once called the hazards of happy face advocacy, because if you only tell the joys, then we’re not learning or we’re worse, we’re alienating the fun that is the parent who is struggling. And they think sometimes I don’t want to tell where I was not the best dad. And you know, one example wearing these headphones is reminding me, I would find phases of Lucas where he was too loud and too complainy. And I thought, well, maybe I can just put on some headphones and sort of tune him out. It wasn’t tuning him out enough. And I was like, I was on the edge. And and there were times I’m like, I can’t take this, you know, on the other side of that is what choice Yeah,

Heather Straughter 31:27
no matter how much sort of like work you do on it, some of those things still, they just show up. One of the other things that I would love to talk more about, is your work with global genes. And were you involved prior to Lucas? Yeah,

Daniel DeFabio 31:42
I think probably like a lot of people. I didn’t know what a rare disease was, I had no reason to seek out something like global genes until there was a rare disease. I’m learning these new things are called Rare Diseases. What is that and friend of mine said, Oh, I have a friend who’s working with this group that works with rare diseases. And I looked him up. And the group he was working with was global genes actually entered the first story ever wrote about Lucas, which was called how parenting a dying child changed all my expectations, it won a contest to global genes. And that was one of the things that thought made me think, oh, maybe there’s value in this if people are gonna benefit from hearing these stories. And so that encouraged me to go to the global genes event, they do a big conference every September called the Patient Advocacy Summit. I went that year. And it opened my mind because I had been doing what I call advocacy was raising awareness, making some noise, figuring if people knew how bad this monkeys disease was, somebody would fix it. Well, that’s a little naive. But that’s step one, maybe that’s probably step one. And then I get to global genes. And I see all these real advocates that are seasoned, and you know, they know what they’re doing. And they’re going all these different directions. Some of them are funding research and making it happen and trying to get the cures, and some of them are only funded is only fundraising, fundraising for other things like what you do with the medical equipment. So all of a sudden, my eyes are open all these different paths and ways that you could be an advocate and you could, you know, serve. And I met some amazing people. And bobek Lowe was one of them, who we found at the film festival together and that sort of channel together. And when Lucas died, it’s terrible to look for the silver linings. But my schedule was different. You know, I had been my own boss for a long time, most of my career. And that was great for being Lucas’s caregiver, because you could move the schedule around, however he needed to based on his schedule, and without the demands of being a caregiver for him, I could go work for somebody else on their schedule. And at the same time, this again was 2020 COVID. And a lot of people were thinking is my work meaningful? Work was making TV commercials. And I enjoyed it as fun but it wasn’t super meaningful. So I thought, this volunteer stuff I’m doing for monkeys and rare disease that’s meaningful. That’s what I love,

Heather Straughter 33:52
and it has a different impact after Yes. And

Daniel DeFabio 33:55
then there’s the legacy issue, right? Like, yes, so much of it is that piece of your identity that was tied up in caregiver? I don’t know if everyone realizes soon enough, I didn’t soon enough realize that caregiver is a separate and different job than parent. And for a while I kidded myself that they were the same. I’m just being as parent. That’s what any parent would do. Anyway, without that, taking up its demands on your time, I was able to approach global genes and say, Do you need someone like me, it looks like you have an opening and like, Oh, you’d be great hair. So I’m very glad it worked out. It’s been about three and a half years. And one of the things I get to do theirs teach other people tell their stories, their medical, rare disease stories among the people I met. So in that workshop, there’ll be Mike Porath, rare disease dad from the mighty and he was somebody my first writing was on the mighty mighty, I followed them. Yeah. And when I went to my first global genes event, I knew Mike by email, but I got to meet them face to face. Oh jeans. And likewise, we have a contributor from the everylife Foundation. I met some of those people, global jeans and courageous parents Network. Because another great resource where I’ve, for a while, was a writer for them. And Jesse finds a writer for them to, I think, sort of three powerhouses that I get to bring together to help people tell their stories next week. So I’m excited about that. That’s fantastic.

Heather Straughter 35:10
This is a second time I’m using the word jealous within this conversation, but I love everything that you are talking about all of these opportunities in places because it has taken me a while. And I think mostly because once Jake passed, I threw myself into Jakes Hall from heaven. But I’m finding, you know, like, I wanted to start this podcast because I really just I wanted to have these conversations. And I’ve been threatening to do some writing, but not really doing much of it. But But I do feel there’s so many stories to tell, and that we have these stories. And I love that you are you’re like knee deep in it. And I’m I may be following up with you about how I can how I can do it, too. I was listening to you on a different podcast talking about storytelling. And I was like this is, you know, it’s when you realize there’s a whole world like that you’re not the only one thinking these things that you have partners who are thinking and working on the same things. And whether it’s about grief, or whether it’s about sharing stories, or whether it’s about the rare diseases or the Undiagnosed our stories can help other people. And I do think it’s important that they’re told, and I love that you are telling them.

Daniel DeFabio 36:11
Yeah, I think that’s kind of one of the advantages of going to the global genes event is, like I said, you get exposed to so many things, you get a crash course and not just the information that’s being presented, but the people you’re meeting, and you’re like, oh, this person is doing it this way. And this person is doing a podcast and this person is doing a book and and then some of those things are right for you. And some people are not but if they’re not, maybe you go, oh, this person is raising a lot of money. Maybe they can help me raise a lot of money. Yeah, yeah, you find your we always say you got to find your people. But first, you almost have to know who your people are, which kind of people you want to find. Exactly. And it’s great if somebody’s bothered to collect them all in one place.

Heather Straughter 36:48
No, I think it’s fantastic. I think that’s great. How do you channel your grief into good,

Daniel DeFabio 36:52
they say the six you know that people talk about five stages of grief. But the sixth stage of grief is meaning or meaning making purpose building. I’ve really latched on to that. I think that’s what I need to do. Probably most people, whether they know it or not, they’re trying to do it. Yeah, for now. It’s certainly global genes work as part of it sort of channel work as part of it, its legacy. But it’s, it’s also, you know, if the voice of Lucas were to come to me and say you’ve done enough, you can stop, I don’t think I’d stop

Heather Straughter 37:20
and get stopped. Yeah, there is something really powerful, I think about that sort of sixth stage of grief of like making meaning of stuff. Again, this is gonna sound corny, but like, I almost feel like it’s become kind of like a calling right like of we have these experiences and these insights because of the path our life has been on. There’s ways we can be of service to others. And I think we can be of service to others in ways when people desperately need them. I sometimes say that I want to do more, and I do what I do. Because for me, it is selfish, because I just want to talk about Jake a lot of times and I want to have these experiences where I can continue to have him be present and I can continue to be his mom, whether it’s working still in the foundation, or this podcast, or writing or sharing stories or any of these conversations. I feel like it’s a really powerful way for us to still be Lucas’s dad, and, and Jake’s mom, and not that that’s why you do it. But it’s sort of because of them that we have the information that we have, right and that we have the insights into this world,

Daniel DeFabio 38:22
people like us, I heard either you or one of your guests say you know a lot of phrases we hear all the time, like don’t sweat the small stuff and concentrate on the moment and those life lessons right that we already all know. But we are forced to live them. Yes. And it’s not so much that like we’re better people, maybe we get to be better people, we get to be better focused or something like that or something. And then if the reason your Jake or my Lucas is no longer there, I don’t think you want to revert to, oh, I can shoot my selfies of my food on Instagram and try to find a way to go backward and find meaning out of that having having lived this heightened sort of existential threat life. Once

Heather Straughter 39:01
you’re there. It’s like you can’t retreat. So you just have to go forward and going forward is continuing in this work. Yes.

Daniel DeFabio 39:08
And for some I hope it’s not me but maybe some it’s similar to being like an adrenaline junkie, like I was operating at this level. And I’ve got to stay at this level. I hope for me, it’s more I was shown what matters. I want to stay in what matters. I don’t want to go back to do I have the best car on the street? Or is my whatever vacation plan better than your vacation plan. I had a moment I called it game over very close to diagnosis day it occurred, you know, they’re laying out the prognosis and game over sounds terrible because it sounds like we’re giving up and it wasn’t giving up but I was realizing the games the game playing is over that whole you know, I’m a young man in my career and I’m gonna short chart my course and go on to greatness or whatever I’m going to do. That’s over because what’s the worst thing that could happen to me? You could tell me my son’s gonna die. Well, you just did if there’s a game I lost it or Lucas lost it or whatever. Yeah, so That’s out the window. I mean, I don’t wish it on anybody, but it’s liberating in a way, it’s a certain change of your mindset. Yes, it’s

Heather Straughter 40:08
a, it’s a massive shift, I love the person I have become because of Jake’s illness because of even Jake’s death. And you know, the flip side of that is, I would give a zillion dollars to be a less enlightened person and have my son back, you know what I mean? Like, but since that’s not real, it’s powerful that we have had these opportunities to use what they’ve taught us and kind of tell their stories. So you referenced an article you wrote, and it got me thinking, how do you parent a dying child?

Daniel DeFabio 40:37
The biggest takeaways or mindset changes, right? So because the continuation of that title is changed all my expectations, a lot of the wisdom of the ages, the rules of thumb are the passed down slogans we hear, like, stay in the moment, don’t sweat, the small stuff, it’s all small stuff, those things became very real, instead of just like, oh, that’s probably good advice. It was like, No, this is a survival guide. This is necessary. We’re gonna refocus along these lines. So that’s a big part of it, like listening to that wisdom of the years that you’ve probably ignored for a long time. But

Heather Straughter 41:11
you said something that I just think is so important, right? Like, so yes, don’t sweat the small stuff. And we all say it. And we’ve all heard it a million times. But when your kid is sick, when your kid is dying, when when that is happening, every single thing is small stuff. And I still 13 years later, like sometimes it might be me, or maybe Brian or someone’s getting super worked up over something or none of it is that big of a deal. It does change your your life a little bit to be able to like step back. And

Daniel DeFabio 41:36
so those lessons were important for me to embrace and sort of cling to Lucas was in a way our guide through it, because he was so happy. Usually you take your average person, I don’t know if they’re 50%, happy 50% Sad in their life. But Lucas was like 80% of his time, beaming with joy. And he’s bright blue eyes and this big wide smile. And if he’s like that, and you’re stressed out, you’re thinking about his next appointment and his next possible symptoms. And but he’s like that, and you can sometimes on your better days, you can kind of look at him, be it a little bit more peace. He’s not worried. Maybe I could worry a little less in a way he got it? Yeah, got it. It’s like, how do you get through the difficulties with Lucas with Lucas, perspective and size and scale is part of perspective. And so to the extent I have advice for anybody who’s going through a hard time, I usually say, go to the ocean, or go to the mountaintop, or go to something epic. Look at the stars. And I didn’t know, I knew it worked for me. I didn’t know why it worked. And then I started reading this book called all by Dr. Shelton, I think his name is and he says, ah, is an emotion, I never would have thought it was an emotion. But in terms of why it would benefit us to experience Ah, is that you look at the vastness of an ocean, or mountain or scope stars in the sky starts to trigger in us an understanding of patterns and systems that are bigger than us. All of a sudden, that made a lot of sense. First of all, it brings your giant weight on your shoulders down to a speck in the cosmos. Right. So that’s good, puts you into proportions. But then if you start to think about systems, what systems are out there, right forces of nature, things that are out of control, you know, if it’s out of your control, are you gonna, you’re gonna rail against it or just try to go with it. And then other systems like the manmade systems, like the medical system, that doesn’t work all that well. And then okay, well, maybe there’s something there that I can actually

Heather Straughter 43:26
address, because that’s something I can Yeah, it’s like a lane I can go in. Yeah.

Daniel DeFabio 43:30
So those were part of our adjusted mindset, coping skills.

Heather Straughter 43:34
It’s interesting that you talk about the like, you know, look at something epic, because that’s such a natural thing, I think, because like when you are at the ocean, right? And you look at it, like every time we’re there, Brian and I are just like, one of us at one point, like, whether you’re watching a sunset or a sunrise or just looking you’re like, how can it be so big? You know what I mean? Like, it’s just, it is awe inspiring. And it does make you realize that you’re just this one very tiny piece of this whole huge world.

Daniel DeFabio 43:59
Part of the comfort for me was it’s a genetic mutation that causes monkeys disease mutation right there, you know, it’s like a freak occurrence. And you can get into the statistics of how unusual and unlikely that is. Also, in our case, it was de novo Meaning nobody in our family had thankies disease, so it wasn’t inherited. That shouldn’t matter. But it mattered to me. Guilt her I take right well from especially for moms who are carriers and feel they pass something on I know there’s a special kind of guilt they shouldn’t have but but it’s like this emotion that Yeah, but knowing that it was a complete random fluke, and it’s the numbers one in 10 People get a rare disease and then I had to process that and and how well one in 10 people is us. Yep. Sometimes you’re the one in some ways that took care of the why me questions.

Heather Straughter 44:50
So it’s the portion of the show Daniel, where if you have any questions you can ask Heather, anything.

Daniel DeFabio 44:55
I would like to know was there a time you were misunderstood? Good and very surprised, like, how could I have? How could you have not known what I’m saying or dealing with or what was so obvious to you, that was not obvious to your friend or family member, whatever.

Heather Straughter 45:11
I feel like, like my head’s going on, like in many different directions. One of the things that was so clear to me in Jake’s life, right, was that I was going to create this life to the best of our ability in which we would have and I don’t want to say normal, but I think for a while, I wanted us just to be a normal family with a sick kid, if that makes sense. So we would do stuff, right, like, and we didn’t do crazy stuff, because like, the doctors advised that he should never be on a plane because he had liquid, you know, layer of fluid on his brain, like there was stuff but he was pretty okay, if we were in a two to three hour car ride, so we could go to the city, or we could go to Lake Placid or we could go to Montreal, or we could go to Boston, like we kind of had this like radius, you know, and, and we just wanted to live this life, right? Like very desperately and there were people very close to me that judge that I think they just felt like we should stay home or that we should we have a sick kid, you shouldn’t do that. And I remember a feeling like shut the EFF up, like, you know, like, you’re not in my shoes. So don’t. And also just being like, I would never tell anybody how to raise their other kid. But when you have a sick kid, why do you think you can tell me what you think I should do? So I don’t know that that’s exactly it. But that’s one of those times when I was like, like looking back, we worked really hard to take really good care of Jake and to really give him this this great life. And were we perfect at all times? No. But But part of that was for our family to be a unit that could still do things, right. Like it wasn’t going to be the only one of like, we weren’t a divide. Like sometimes we were divide and conquer because we had to be. But we also tried really hard to just do things as a family. Yeah.

Daniel DeFabio 46:38
I feel a lot of judgment behind that scenario that, you know, the implication is, I would be 24/7 medical care for my kid if I were you. Yeah. Like

Heather Straughter 46:49
I wouldn’t, you know, I wouldn’t be putting them in a situation like what did it and I tried to give people the benefit of the doubt, because who the hell is anyone to tell people what they should do? With their kids? Right? Also,

Daniel DeFabio 46:59
I’m judging all your friends. Yeah. But it also sounds similar to something you said earlier on, when somebody said to you, you must have known he was gonna die. And I think that had to come from the fear. If it was me, how could this come out of nowhere? And I not know it? Because if, if that’s true that it can happen to any of us? Well, guess what it can happen. And

Heather Straughter 47:20
that’s what people don’t want to face. Yep, that’s 100%. And that was a lot of like, I think, well intentioned people. But it was fear.

Daniel DeFabio 47:28
And because we’re so hung up on mortality in general in general. And so some, you’ve probably had the same experience, some people step up, and some people step away, it’s too scary for them. And they don’t want to factor it into could it be me? Or could it be someone close to me and then flipping the coin to the positive side, you know, it can open these wonderful relationships where instead of talking about the weather, today, we’re talking about deep meaningful stuff and, and I never knew like someone is being extra kind or extra interested in Lucas or whatever. And then you find out, they’re having trouble with their mom’s Alzheimer’s or their dad’s cancer, whatever. And Robin Roberts says, everybody’s got their something. Yeah. Well, when your something is sort of out there for the world, you find out a lot more of everybody else’s some

Heather Straughter 48:11
100%. Yeah. And it goes back to sort of the thing I said about Jake, right, like, what He has given me is this ability to help ease other people’s burden. And sometimes it’s exactly what you said, it’s because like, our stories are so extreme, and they’re so whatever, that it, it almost makes people feel better. But it also opens up this ability of these conversations. And I’m sure you know, like when Lucas died, or you know, when Jake died, people come out of the woodwork who have had who’ve lost a child or who have had a similar experience. It made me recognize that there’s so much we don’t know about people, right? You know, kind of like, yes, everyone’s got their something but there’s just we don’t know like, we only know what people let us see, I just always try to remember that. I have very much enjoyed this conversation with you. Me too. And I am very grateful that you agreed to be on this show. So thank you, Daniel.

Daniel DeFabio 48:57
Absolutely, anytime.

Heather Straughter 49:00
Thank you for listening to a place of yes, please follow us wherever you listen to your podcasts. If you really liked this episode, please share it with a friend, anybody who might benefit from listening to this, it would make a world of difference. If we could just reach more people and share the work that we do and the stories we want to tell. Please subscribe to our YouTube channel. Leave us a thumbs up or leave us a comment. We would appreciate all that you can do. If you really liked this episode, please share it with a friend or two.