What No One Tells You About Parenting a Child with Rare Disease - Emergency Surgeries & Advocacy

Summary

Podcast Summary: "What No One Tells You About Parenting a Child with Rare Disease - Emergency Surgeries & Advocacy"

Podcast Information:

• Title: A Place of Yes | A Grief Podcast
• Host: Heather (Bright Sighted)
• Description: “A Place of YES” is a podcast about using your grief to create something good. The non-profit Jake’s Help From Heaven releases weekly episodes showcasing the good that has been done in the 14 years since Jake’s death. You’ll meet mothers who know Heather’s grief and her joy. You’ll get to know the children that have been helped by Jake and you’ll meet the people who have helped make all of this joy possible.
• Episode: What No One Tells You About Parenting a Child with Rare Disease - Emergency Surgeries & Advocacy
• Release Date: April 3, 2025

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Introduction

In this poignant and deeply engaging episode of "A Place of YES," host Heather continues her heartfelt conversation with Jessica Troiano, a dedicated mother navigating the complexities of raising a child with a rare disease. The episode delves into the harrowing experiences of emergency surgeries, relentless advocacy, and the emotional toll on families dealing with rare medical conditions.

Personal Stories and Emergency Situations

The episode opens with Jessica recounting a recent emergency situation involving her son, Jude. At [00:00], Jessica describes a tense moment when she receives a call from Jude’s school reporting that he is vomiting—an unusual symptom for Jude. Her immediate suspicion of choking sets the stage for a high-stakes narrative:

Jessica Troiano [00:00]: "I get a call from school that he is vomiting. I said, Jude doesn't vomit. So I said, I think he might be choking."

This incident mirrors a similar past event, highlighting the unpredictable nature of Jude’s health. Jessica’s calm demeanor in crisis is evident as she navigates the situation with clarity:

Jessica Troiano [02:38]: "In an emergency situation, I am very calm. I actually... think very clearly afterwards."

Navigating the Medical System

Jessica provides an intimate look into the challenges of dealing with medical professionals who may not fully understand Jude's unique needs. She emphasizes the importance of having a strong support system and being prepared for unexpected emergencies:

Jessica Troiano [05:35]: "The ride to the hospital was absolutely crazy because inside the ambulance, all of the doors are opening and closing. Things are falling out... I wasn't going to worry about that."

Her frustration with the lack of preparedness and understanding from some medical staff underscores the difficulties rare disease parents face in advocating for their children.

Advocacy and Expertise

A significant portion of the conversation focuses on the role of parents as primary advocates and experts on their child’s condition. Jessica discusses the necessity of educating doctors and ensuring that medical teams respect and rely on her knowledge:

Jessica Troiano [10:14]: "His providers that we have... I am happy to give information. I am happy to talk about Jude with medical professionals all day long."

Heather echoes this sentiment, praising doctors who recognize and defer to parental expertise:

Heather [10:37]: "The good doctors had no ego and can say, hey, I have not seen a kid like this, but this mom knows what they're talking about, and let's work together."

Emotional Impact and Coping Mechanisms

The emotional weight of these experiences is palpable throughout the episode. Jessica shares the profound fear and uncertainty that accompanies each medical crisis, as well as the resilience required to keep pushing forward:

Jessica Troiano [08:02]: "These are things I worry about all the time."

Heather relates to these feelings, discussing the constant vigilance and emotional strain that parents of children with rare diseases endure:

Heather [09:45]: "The ones who wanna tell you, they're the doctor. That's where it gets hard."

Coping with Hospitalization and Daily Care

Jessica elaborates on the daily realities of caring for Jude, including the constant need for vigilance and the challenges of managing medical equipment at home. She highlights the delicate balance between protecting her child from hospital environments and ensuring he receives the necessary medical attention:

Jessica Troiano [15:03]: "I can't sleep. I can't. You know, I'm alert eyes on him all the time."

Building Strong Relationships Amidst Adversity

Towards the end of the episode, the conversation shifts to personal relationships, specifically focusing on Heather’s relationship with her husband Brian. This segment provides a contrasting yet complementary perspective on managing familial relationships during crises:

Heather [25:09]: "We became closer because we cling to that. It's nice to not always have to explain yourself."

Jessica and Heather discuss how shared struggles can strengthen bonds, emphasizing the importance of mutual support and understanding:

Jessica Troiano [25:35]: "It's either you are reminding me of all things that I can't, or you are... we have realized we're in the fight together."

Notable Quotes

• Jessica Troiano [02:38]: "In an emergency situation, I am very calm. I actually... think very clearly afterwards."
• Heather [10:37]: "The good doctors had no ego and can say, hey, I have not seen a kid like this, but this mom knows what they're talking about, and let's work together."
• Jessica Troiano [08:02]: "These are things I worry about all the time."
• Heather [25:09]: "We became closer because we cling to that. It's nice to not always have to explain yourself."

Conclusion

This episode of "A Place of YES" offers a raw and unfiltered glimpse into the life of a rare disease parent. Through Jessica Troiano’s experiences, listeners gain a deeper understanding of the constant vigilance, emotional resilience, and unwavering advocacy required to care for a child with complex medical needs. The candid dialogue between Heather and Jessica not only highlights the challenges but also celebrates the strength and love that drive parents to create a place of YES amidst their grief and struggles.

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Sponsors: A heartfelt thank you to Adirondack Trust Company and Amshur Insurance for sponsoring this episode and supporting the sharing of these essential stories.

Support the Podcast: If you found this episode moving and insightful, please share it with a friend. Your support helps us reach more people and continue sharing the impactful stories that inspire and uplift.

Transcript

[Jessica Troiano]

I get a call from school that he is vomiting. I said, jude doesn't vomit. So I said, I think he might be choking. Is he choking? Can you check with the classroom? They call the classroom. Classroom says, nope, he didn't have anything in his mouth. This is a. I have to take care of it. I don't have a ton of time. His nurse comes out when I get there and says, we think it's part of his chew toy that is broken off. And I said, well then, yes, he's choking. They said, we are worried it's going to lodge further and then he will not breathe. We are prepping the or, so it's a whirlwind of everything.

[Heather]

Welcome to A Place of Yes, a podcast about how I moved through my darkest hour.

[Narrator]

And for me, that was in channeling my grief into good.

[Heather]

Welcome to the show.

[Narrator]

This episode is the continuation of our.

[Heather]

Conversation with Jessica Troiano.

[Narrator]

When we recorded together, we spoke at such length that there was far too much content for one episode and cutting any of it felt impossible. I am thrilled to bring you part two of that conversation. In the first episode, Jessica shared her journey as a rare disease mom to her son Jude, offering an intimate look into their day to day life. She spoke about the overwhelming isolation many rare disease moms feel and the constant worry that comes with the relentless stress of keeping our kids alive. In part two, we dive deeper into the complex medical realities of rare families. The struggles with doctors, the multiple diagnoses, and the surgeries, both planned and unexpected. I know many of you will relate to Jessica's experiences and for others, it will offer a window into the challenges faced by rare disease moms. We'd also like to extend our heartfelt thanks to our sponsors, Adirondack Trust Co. And Amshur Insurance, for helping us share these important stories.

[Heather]

So in the 10 days, less than 10 days since I saw you last, when we talked about, you know, you updated me on Jude and you said, you know, he's been doing so well. I got a text from you a few days ago that he needed emergency surgery. That is just such an example of the lives that our kids have. So can you share that story like kind of what happened? And I know we were saving it for this conversation, so I kind of want to know what happened. Yes. Emergency surgery, unexpected.

[Jessica Troiano]

Yes. And again, a great point that things turn very quickly and can be very scary and very urgent. These are not, okay, somebody fell down, hurt themselves and broke a bone.

[Heather]

It's not the text I got from Ethan where he had to go get X rays because he broke his pinky. You know, it's not that different Life go right, like. And it's not even. It's more like a heavy sigh in an eye roll. It's not a clenching, you know, there's.

[Jessica Troiano]

A difference, of course, I think of what if something happened to Tristan? Of course you do. You're a parent. And I do recognize the difference in me between my thoughts of what if something happens to Jude? A very real and probable thing, versus what if something happened to Tristan. Tristan. Which is much more, I don't know, an existential.

[Heather]

Yes. Yep.

[Jessica Troiano]

What would happen? That's the difference there. And it is highlighted very clearly with what happened on Friday. I get a call from school around 2:00 that he is vomiting. I said, jude doesn't vomit. Like, this is not that he can't. Some kids with JG can't. Jude can vomit. He has. He does not. It's been a couple times in his life. So I said, I think he might be choking. This did happen at school in June of 22. Very similar. He was vomiting. They called me. They actually knew he was choking at that time. He gets sent to Albany Med. The doctor examines him. They were able to pull it out. Fast forward to Friday. I get the call, he's vomiting. I said, I don't think so. Is he choking? Can you check with the classroom? They call the classroom. Classroom says, nope, he didn't have anything in his mouth. And I said, okay, well, regardless, right? This is a. I have to take care of it. I don't have a ton of time. I'm going to get in the car. I'm going to come now. I didn't feel comfortable driving alone while Jude is vomiting potentially in the back and I have to suction him. My mom comes very quickly over. She comes with me. His nurse comes out when I get there and says, we think it's part of his chew toy that is broken off. And I said, well, then, yes, he's choking. So they're like, there is a little bit of blood in the vomit. And I said, well, then he's definitely choking. I am. I can. In an emergency situation, I am very calm. I actually. I don't know how, I don't know why, I don't know how, but it does change. And I'm able to say things much clearer. Think very clearly afterwards. Whoa. It's a different story. But right now I'm there. I said, okay, we need to call 911. We need to go to Albany Med, let's get them on board. EMS gets there. There's like, six guys there. They're taking his blood pressure. It's 70 over 40, so very low. I'm saying, like, okay, now we have to get him going. And I said, he's also sliding down in his wheelchair. I start lifting him up, and one of the guys says, we'll get him on the stretcher. So I just pick him up and carry him to the stretcher. Let's go. Actually, the ride to the hospital was absolutely crazy because inside the ambulance, all of the doors are opening and closing. Things are falling out. The Emma suspects. They're saying, don't worry about that. I'm like, I wasn't going to worry about that.

[Heather]

I've had that experience, and I don't understand it. I don't get it either.

[Jessica Troiano]

We get to the hospital, and it does take about an hour and a half before they start recognizing and realizing that I know what I'm talking about. I had the chew toy with me so I could show them. I mean, he is vomiting every minute. Really every minute. And it is brown and it is thick, and it's coming out his nose. And I'm suctioning him as best I can. We are waiting for an X ray. They bring us down to the X ray. No suction, no oxygen. I'm there in a hallway alone with him. We get the X rays done. Eventually we get back to the room. And eventually they say, this is on top of his airway. He is breathing still. And I think that was the big thing, is that his O2 levels were okay. Jude compensates a lot. I think he was working really hard to get every breath in. They said, we are worried it's going to lodge further, and then he will not breathe. We are prepping the or. So it's a whirlwind of everything. They get him down. I'm following them. And half the team is stopped. Half the team is with him leaving. I'm standing in the middle. Where do I go? They're like, well, that's the. Or you can't be here. I said, you said to follow. I'm gonna follow.

[Heather]

Yes, I can. Yeah, Yeah.

[Jessica Troiano]

I end up waiting in a. Eventually, it was easily resolved. Thank God it was. They scoped the nose. They went, saw it right at the top. Were able to extract it, no problem. The problem being that he should not.

[Heather]

Have gone through that on so many different levels.

[Jessica Troiano]

He works so hard every day just to do daily tasks, daily things that we take for granted a lot as very able bodied people and going through an emergency surgery is not one of them the scarier thing. And when I was texting you as well, it was also like, we did not know what was happening. They were talking about, okay, well we might have to do an incision. If we have to do a trach for emergency life saving. Would you need that? Would you want that? Trying to make these decisions very quickly on your own is not something that you would have to do normally. Right. These are not things that parents think about that people on a daily basis have to worry about. And these are things I worry about all the time.

[Heather]

And most people don't have to worry about them at any part in their life. Right. Like if you get yourself in that situation where you're worried about it, it's. It's something tragic, rare, quickly, random has happened. It is not an ongoing thought or concern or experience.

[Jessica Troiano]

Like a one and done, right?

[Heather]

Yes.

[Jessica Troiano]

Okay. I choked on some meat. It's out. Good. It is every day. I mean, for a long time I kept a hospital bag packed because I was like, I can't do this every time we're going to the er and because Jude is so unique as well. When we get in, we're keeping him. We're gonna. A resident, resident, resident is gonna see him. Everyone's going to test him, everyone's going to look at him. Everyone's gonna get information from you. I am happy to give information. I am happy to talk about Jude with medical professionals all day long. I could. When it's constant poking, prodding, waking him up, you know, when he needs the rest, when he is in a stable position, like that's where I sort of have more of a hard time dealing with everybody.

[Heather]

So several times in that story I almost had like out of body. Cause I know exactly that feeling. And then you just touched on it. One of the hardest things I think about this life is not taking care of our kids and is not our life with our kids. But it is that when we have to educate doctors and people who should know better and we have to do it vigilantly, you don't have the privilege to stress out and worry about your kid in that situation. Because taking your eye off the ball, you could lose them. Because our hospitals are not equipped for our children as much on us to keep them alive, even in the hospital setting as it is on the doctors. So that feeling of having to educate and then everyone wants to see and everyone thinks it's the worst. And oh, I've never seen this before. Oh, I've never seen this before. That I used to find harder sometimes than the actual reason you're there.

[Jessica Troiano]

Yes, I agree. I will say his providers that we have the specialists. I mean, we go mostly to Boston Children's Hospital, just because that seems to be the right place for Jude. It's the emergency stuff, of course. A seizure where he's not breathing. You know, O2 is going way down. We need to get somewhere quick. We're going to Albany Med. In general, I have had good experiences, but it's interesting because the good experiences are mostly because the attendings there are saying to me, I'm deferring to you.

[Heather]

And that's what I would always say I respected. And I mean, who am I, right? But the good doctors had no ego and can say, hey, I have not seen a kid like this, but this mom knows what they're talking about, and let's work together. And what do you think I need to do? And they have the ability to do it. If we had the ability to do it, then we wouldn't even be there. The ones who wanna tell you, they're the doctor.

[Jessica Troiano]

Yes.

[Heather]

That's where it gets hard, right? And I think you're right on. We at one point with Jake, we don't ever quite know why this happened, but he was on so many meds. His bones were really weak. He had that ostentipenia, and he broke his femur laying in bed. It was one of the few times he screamed bloody murder. They did an X ray. He had a broken femur. And, like, said it, do what you need to do. We're going to Boston. And they're like, you can't take this kid to Boston. I was like, the hell watch us. And we did, and we took him to Boston. At that point, his orthopedic surgeon was at Mass General. He was like, going through the er. When I'm done with my day, I'll come in and do this program. I mean, it was just the exceptional doctors who have no ego and just do it. But for us, we did not trust that our local hospital would know how to keep him alive through that surgery. That is another level of this. So you're not only dealing with the choking and this, but you're on pause while you're waiting for people to catch up and figure out.

[Jessica Troiano]

And there's a couple things I was thinking of as you were telling me that. But the first was again, yes, absolutely. On Friday, I remember one of the doctors looking and saying, well, he's 13. He'll probably just swallow this and we'll pass. No, and now I'm like, okay, I'm gonna.

[Heather]

Yeah, Now I gotta.

[Jessica Troiano]

Dude. Yeah.

[Heather]

Now I gotta step up. Yeah.

[Jessica Troiano]

Did you read his chart? Because I'm gonna tell you his chart. Oh. He had a spinal fusion three years ago. So from the occiput to C3, we have this. And they're hooks because the screws don't fit because they're too small. And he's, like, looking at me and I'm like, oh, you Pokemon.

[Heather]

Yeah, buckle up.

[Jessica Troiano]

Are you ready? This is where we're going. And then it was, okay, we're going. We're gonna get him. Just get him in. And so there's that, like, yes, absolutely. There are the doctors that do think, ok, well, this is a typical child would do this and kind of don't see the needs, which sometimes I could appreciate in a different circumstance.

[Heather]

But at that point, you're like, what is happening?

[Jessica Troiano]

I'm like, I'm at a doctor's. You know, I'm in a hospital for you to help. Most of the time. I really advocate for Jude to be home because I'm like, I have oxygen, I have a suction. I got trained in how to do deep suctioning, even, which is something normally parents don't do.

[Heather]

Most parents, I don't think, know it's suctioning.

[Jessica Troiano]

No, I don't think it's.

[Heather]

I mean, maybe we can, like. I'm like, oh, that's totally normal.

[Jessica Troiano]

Yeah.

[Heather]

But no, so suctioning, right, like, is. They used to be like the little, like, bucket. And I always hated how hard the right. Like, it's like you turn it on. It's like. That is my impersonation of a suction machine. But you, like, stick it in and you gotta be careful not to, like, gag them and make them puke. And sometimes you do, but you.

[Jessica Troiano]

If you go too far.

[Heather]

Yeah, you go too far. But like, with Jake, like, he couldn't always, like, if he had a cold or he had anything congestion. He couldn't clear it. Like, he didn't have a strong cough to just move it. So you had to get it out for him.

[Jessica Troiano]

Yes. And that's what we. When we first got it, it was. Jude's cough was not strong enough. And we had a cough assist machine which would actually. You would put a mask on.

[Heather]

See, we never had one of those.

[Jessica Troiano]

And it would push the air in and then pull it out.

[Heather]

Pull it out.

[Jessica Troiano]

Absolutely. Like torture device type things.

[Heather]

Yeah, Sounds horrible.

[Jessica Troiano]

Like, they were like, you can try it just to know. And they're like, but do the minimum setting. And they're like, but Jude would get this. And I'm like, oh, dear. We have the vest, which goes around and shakes like the percussive vest. Jude adores it. Most of the time when we're suctioning, it's just like. Well, he can't blow his nose. We can't say, you're stuffed up, bud. You know?

[Heather]

Yeah. You gotta get it out for him.

[Jessica Troiano]

It's that old. Like, I know new moms have, like, the nose Frida thing that is absolutely disgusting to me, but I know they use it and they just suck out the boogies. That's the same thing. But the suction is great. It works.

[Heather]

Well, I took us down the suction journey. The point being that. And I was the same way with Jake. Right. You want to keep them home because. Yes, sometimes you need to be at the hospital, but sicknesses at the hospital. Right. And I would. I at least was always worried, like, an ear infection could be what kills my kid.

[Jessica Troiano]

Right.

[Heather]

Because it's a slippery slope. So you gotta keep. It's that balance of, like, you want him to go to school and you need him to get what he needs, but you also need to protect him in a different way.

[Jessica Troiano]

Well, I also think a lot of times my experience has been because I am the one that stays home or stays with Jude, and Alex really stays home with Tristan. That's typically our dynamic of how that works. And when I am there, I see a lot of the times that it is me in a room with Jude, so I'm taking care of him anyway, but I have no other supports. I can't call my husband in to help me change a diaper.

[Heather]

I can't. You're not comfortable. You're not in. I can't sleep.

[Jessica Troiano]

I can't. You know, I'm alert eyes on him all the time. I don't want him in the hospital if we don't need to, for many reasons. I do not want him in there because I do not want the germs and the other things that go along with it. And I also don't want him in because I know that I can have better eyes on him at home. And unless he is having a true emergency where we need to be in there for a while, we have been lucky enough that our providers that we have are phenomenal. Boston's excellent. He was actually born with cataracts, so we did cataract surgery. Like, was that the first surgery the very first was the G tube.

[Heather]

Oh, the G tube. You said that. Yep.

[Jessica Troiano]

At six days old. The next surgery was the eye surgery. So he had the cataract surgery at a year. That sounds like Benjamin Button.

[Heather]

Yeah. I was gonna say, isn't that. That's a little backwards.

[Jessica Troiano]

Yeah. Kind of went backwards in that, but he had that done. They put lenses in. I was like, okay with that. Sure. Okay. You know, he. He doesn't have great vision. That's okay. I'm here in his face. I don't need to worry about that. The news that he was deaf and not hearing, I broke down. I just had a hard, hard time with that. I think that's actually the only thing that I've really had a hard time with. Aside, I will qualify that. Aside from his spinal fusion, that was a much harder story. That was a much harder buildup to it. But, yeah, his deafness was difficult to process. Now I don't even think of it, really. I mean, we talk to him, we laugh with him. He clearly loves music. He gets music therapy. And again, in how I respond to things, it was, okay, well, now what do we do? And I make a very clear point with doctors. Like, just because you can do it doesn't mean you should. But it's real. I mean, there are so many different surgeries that could be done to fix Jude. And no, most of them we shouldn't even consider the things we should consider. I remember seeing neurosurgery here at Albany Med, and the doctor there was very good and said at the time it was actually the neck was caught because of an X ray of his chest. And they said, well, there's a bit of an anomaly in his neck. We need to go get that pursued further. And so they took more X rays of that. And we saw neurosurgery because the vertebrae are supposed to be circles that are connected and go straight down, right? And you have your spinal cord in between with the dens so that everything stays in place and doesn't touch. If you touch, you're paralyzed. And Jude's was not formed properly. So the occiput. So you have your skull, and you have the base of the skull and has the beginning of the spine. And his was open, and because it was open, it couldn't be supported straight. Jude's neck was always tilted, and it was just anatomically how Jude Drew was born. That's just there. And what was happening is it was compressing his spinal cord. And they said, it's about halfway of what we normally Would have. And if that dens touches at all from the neck down, he would be paralyzed. And most likely, what would really happen because parts of your spine control different things in your body. The top is the breathing. And they said he would just not be able to breathe. And it would be an agonizing, slow thing to have happen to hear that. I don't even know if I have words for that. I do know that the doctor said I would not do it here. He would probably have a stroke on the table and not make it. We did not do anything for years because I heard from a very respected. And I totally appreciated that he was like, I don't feel comfortable doing this, and I don't think you should right now. That Jude would not make it. As the years went on, we would get this looked at, and it got worse to a point where they said, you have to do it because it will happen. Well, how do you make a choice when there's no choice? How do you make a choice? You know, okay, well, we have to do this. Well, we're going. We went to Chop in Philadelphia and had a second opinion there and Boston and talked and went back and forth. I liked both of those are phenomenal places to go. You can't actually. Oddly, I was told originally Utah was the best place to go to Salt Lake City. I said, well, I'm not doing that. Why? They ended up in Salt Lake City. I feel like that's a missed opportunity. Comes closer to one coast or the other.

[Heather]

Yeah, random.

[Jessica Troiano]

Yeah, very random. And I said, that's just not. That can't happen.

[Heather]

Well, that's like a. It's a trap. Like, it's a different kind.

[Jessica Troiano]

So many different things with it. I said, I'm not gonna do that. So I can do Philadelphia. I can do Boston. I could do New York if I needed. But that actually was off the table. Like, that wasn't the place to go. We chose Boston. In the end, it did get pushed because, of course, it was supposed to be right at the beginning of COVID and the protocols were not in place. Like, we. They were like, we can't do this yet. This is too big a surgery to just do while we're figuring all this out.

[Heather]

I mean, how hard, right? You finally come to terms with what you need to do, and then we are in a global pandemic.

[Jessica Troiano]

I know. So we ended up waiting. He had the spinal fusion done there in March of 21.

[Heather]

Okay. So a year later, then a year.

[Jessica Troiano]

Later, which was scary because everything was like, don't jostle Jude. And he, again, he's a maniac. Like, you put him on your lap and he like, you know, rocks out. And I'm like, don't do that.

[Heather]

Settle down.

[Jessica Troiano]

Don't jar this area. He could care less.

[Heather]

He thinks nautilus is the best.

[Jessica Troiano]

I remember talking with his pediatrician and going in. And of course it is during COVID when I'm having this and I'm sobbing. The spinal fusion, the anomalies we saw there were. It's very different. And I'm like, well, I don't want to do this, but this is truly a life saving thing and I don't truly have a choice.

[Heather]

Well, it's hard cause you're choosing between. Because the thing with these surgeries, it's timing, it's doing the surgeries when it's the right moment in their sort of health journey too. Right. Because you gotta, they gotta go in strong. Like, they gotta go in. I don't know. I remember when Jake had his, like he had a double hip surgery and I was like, I need him to go in a little chubby cause he's gonna lose weight. Like, you know what I mean? Like, you gotta, like, he's gotta have reserves because he lived most of his life with not a ton of reserves. There are these scary surgeries that you're nervous about. Cause it's not just the actual surgery, it's surgery, but it's the recovery, all of the factors. But then when you're faced with, if I don't do this, I'm making this other decision.

[Jessica Troiano]

In my opinion, it was just a. Well, there's no choice.

[Heather]

There's no choice. I mean, I like what you said though. Like, how do you make a choice when there is no choice? You know, I mean, that's a lot of the things you have to do.

[Jessica Troiano]

That's what I think really our life is. This is what we have, this is what we have to deal with. This is how we move forward with this. And some of it we can kind of choose a path, but most of it is just, well, this is what has to happen. I feel lucky that I have had the providers that I've had that I've been able to just sit and talk with if I need to, you know.

[Heather]

And we've talked about them a lot. But there is something so special about the relationships you form with some of these really spectacular, extraordinary doctors who we are blessed to come in contact with, you know, and Jake certainly had some. And they fight alongside you.

[Jessica Troiano]

Yes.

[Heather]

And that's so important. There are so many more things I feel like we could talk about.

[Jessica Troiano]

I could talk forever, so.

[Heather]

Well, you know what that means. It's time for Ask Heather Anything.

[Jessica Troiano]

Okay.

[Heather]

We always end the show with the opportunity for the guest to ask me anything. And some people take it as an opportunity to ask me something really silly, like, what's your favorite karaoke song or something? And other times, people go kind of deep.

[Jessica Troiano]

How did your relationship with Brian change over the years?

[Heather]

So I think different than your story. We had a healthy baby for the first eight months. And that. Honestly, I think any issues we had in our relationship was just very typical. It was two young kids not sleeping great. Like all of that just a blur. Like, more that there weren't issues. It was just like that when your life's a blur. Then Jake got sick, and we each had kind of our roles. When he first got sick, we didn't really know he was sick in the beginning. We really thought, like, I was like, oh, it was a Saturday night. And I was like, oh, we had concert tickets on a Tuesday. I was like, you think we're gonna make it to the concert? Like, I still didn't. I had no idea. And I think then we were almost constantly just playing catch up to our life a little bit because we didn't have a diagnosis, we didn't have any names for anything. The genetic tests didn't give us any answers. So we just were flying by the seat of our pants. And it kind of worked for us. Similar to some of the things you say. We just really tried to focus on giving both kids a good life and doing the best. And sometimes that meant Brian was doing more with Ethan. And I was really involved in Jake's day to day, and I stayed home. And some of the things like that was really my job after he passed. I don't have a concrete answer for that, but we became closer. I think it tears apart a lot of families. And I don't think I have a great answer of, like, how we managed to stay together, but it certainly brought us closer. At the end of the day, we have gone through some things that are really, really hard. Kind of like you mentioned, there's not a lot of people who understand the lives that that happen in the struggles and the fears and all of that. And it has brought us closer because we cling to that. It's nice to not always have to explain yourself. Our relationship became so much deeper because we were fighting for our son's life. And there's just something so heavy with that. But also beautiful. Like. Right. Like there's something about that life that's really, you know, what's important and you know what's not important. And sometimes there's jealousy, and you wish you could do more things, and you wish you could get to California easily, and you wish you could do those things. But at the end of the day, you're fighting for the same thing. And I think that for couples, when they can unite with that and support each other, then I think that makes the difference. And I think marriage is hard, and I think you add some of the stuff and it's harder. But if you kind of keep your eye on the job, I don't know, for us, it's kind of worked.

[Jessica Troiano]

Yeah. Just wanted to kind of hear your side of this, you know, going through it for so long, you know, I.

[Heather]

Feel like you can either push everybody away or you can cling to the people who get you.

[Jessica Troiano]

And I do feel most people either. It's an extreme.

[Heather]

Right.

[Jessica Troiano]

It's either, okay, well, this is it. We're done.

[Heather]

It's either you are reminding me of all things that I can't, or you are, you know, and I think we have. Not always perfectly, but we have realized we're in the fight together. And here we just had 20 years. Thank you so much, Jess, for being on the show. I have really enjoyed this conversation. I'm just grateful. Thank you.

[Jessica Troiano]

Thank you so much, really. I have had so much fun. I was so excited to do it. I feel like I could talk for days.

[Heather]

Maybe we'll have a part two surprise.

[Jessica Troiano]

I really appreciate you having me on here and getting to share a little part of my story. Thank you.

[Narrator]

I want to thank Adirondack Trust Company and Amshur Insurance for sponsoring this episode.

[Heather]

If you really like this episode, please.

[Narrator]

Share it with a friend. It would make a world of difference if we could just reach more people and share the work that we do.

[Heather]

And the stories we want to tell. Thank you so much for watching.