← A Place of Yes | A Grief Podcast 
A Place of Yes | A Grief Podcast
The Doctors Were Wrong: A Mother’s Fight for Her Son with 15 Diagnoses
00:32:39
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- [00:02]
Jessica
It is a more than full time job to keep your child alive. The toll that that can take, right? Like, because at the end of the day, we say it very casually because we know what we're doing, but there's nothing casual about it. It weighs on you and it weighs on your relationships and it weighs on your marriage and it weighs on the way you parent.
- [00:21]
Jessica Troiano
Tristan, people don't really understand and they couldn't unless you are living this, they can have empathy toward it. They can feel sorry for you. Until you are living this day to day, you can't understand it.
- [00:38]
Jessica
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 wanted to take a quick minute to thank Adirondack Trust Company and Amshur Insurance for sponsoring this episode. They have been big supporters of the show and Jake's Help from heaven since the very beginning. What makes the sponsorship so special is they've supported so many of the deliveries to our guest son. This conversation with Jessica Troiano, as well as the second part coming next month, focuses on what life is like, which your child requires so much to just live. But more importantly, we focus on the love of the family and the lessons we can learn from all of them. The sponsorship that you guys have given us for so long has done so much to impact the Jake's Hell from Heaven community. And the items the equipment we have given them has been life changing. Thanks again. Hope you enjoy it. So today's guest is Jessica Troiano. We are going back. I kind of call it back to our roots because when we started the podcast, I wanted to showcase, you know, what I would always say were families like mine. And you guys certainly are like that. So, Jessica, I have known the first time we came together I think was 2014. So over 10 years ago, we started working with you and your family. Your son Jude, who is now 13, which is unbelievable to me, has been kind of one of the original Jake's family members, we call them. So, Jessica, welcome to the show.
- [02:16]
Jessica Troiano
Thank you. Thank you so much for having me.
- [02:18]
Jessica
I'm so happy you're here. It was just last week, I think, that we did the delivery and it was the first time, like we had talked then that we had seen each other in person for a while. So even though we've worked together for the last, like 10 or 11 years, it had been the first time I think in quite a bit that we were there and it was just so Nice to visit. You know, I sat right on your floor, made myself right at home. And after an hour, I finally left you alone. I love to share these stories because to me, these are the stories that a lot of people don't know. It's a peek into the lives that a lot of people don't understand, but the families who do, 100% do. So with that said, can you just introduce yourself and your family, talk about Jude.
- [02:59]
Jessica Troiano
I am a stay at home mom. I call myself the CEO of the Treano House.
- [03:05]
Jessica
As you should.
- [03:06]
Jessica Troiano
I take care of all of that. My husband Alex and I have been married 16 years. We have Tristan who who is 14 and has ADHD, but overall is pretty typical. He just started ninth grade. Jude is 13 now and a wild child. But he is, I always say if he was a typical kid, I would be in trouble. He would be my hellraiser. Jude's story is really starts about halfway through my pregnancy. It was at an ultrasound. Everything had been fine leading up to that. It was my 20 week. We did not want to know what we were having. My husband and I were joking. He would like peek and look and we'd laugh. And the doctor was like, I can't see. Just stay quiet. And I was like, that seems different. And Alex had just started a new job at the state. He was on the probation period. He only had a set amount of time. You know how appointments run, we were late, you know, getting in. So he's like, I have to leave now. And the doctor said, okay, something's not right on the ultrasound. She'll probably be calling you later. And Alex said, okay, bye. So I'm there alone. They said, well, the baby is small for gestational size. Looks like rocker bottom feet, which is vertical. Talus is the official name for it. Basically, his feet are shaped kind of curved.
- [04:28]
Jessica
Okay.
- [04:29]
Jessica Troiano
And so they do call them rocker bottom. Rocker bottom for the reason which normally presents with things like trisomy 13. They said, what we are seeing, your baby will probably not survive the pregnancy.
- [04:40]
Jessica
You think everything is normal. And then this is correct. This is what you're sitting there learning.
- [04:44]
Jessica Troiano
This is what I'm learning. Tristan was probably maybe a year at the time. I'm like, I gotta get back to my parents, you know, I gotta get Tristan, I gotta call Alex. They said, we're gonna do all the tests, so we'll start with the amnio tomorrow. And I go, I leave the office, I call my mom, I pick her up at work. And I said, you need to come home with Me and she just leaves work. I call Alex, he comes home. I remember being in my parents kitchen. I'm crying but trying not to. My dad is like, what's going on? And I'm like, calm down. I'm just trying to get a minute that started all of this journey. So that was the moment we found out something wasn't right. All of the testing we did was normal genetic testing we had done. Everyone's like, well, we know something's wrong, but we don't know what. We ended up having a fetal MRI which showed microcephaly. He was a tiny peanut of a thing. So it was very difficult to see a lot on the fetal mri going all the way up to basically the delivery day. I was told like, we don't know what it is, but he's not going to survive. So I am walking around, you know, telling only a select few people in immediate family what's going on. I think that was just more for self preservation of trying to help me deal with this on my own terms, my own time. And there's such an unknown two weeks before I have Jude. I'm like, I better get a bassinet put up or something. You know, I did nothing. Cause I knew I couldn't prepare for that loss. The night he was born, he was born at like 3am on October.
- [06:17]
Jessica
So he started really just.
- [06:18]
Jessica Troiano
He really did.
- [06:19]
Jessica
Yeah. Hey mom.
- [06:20]
Jessica Troiano
There he is. And he's perfect. And you know, like 99 Apgar score. And they're like, wow. I could see the doctor's face from the nicu and she's just like, I don't know what to do.
- [06:32]
Jessica
How did you handle that? 20 weeks to be pregnant for 20 weeks, knowing or not knowing, I guess is really the better way to say that. How'd you do it?
- [06:41]
Jessica Troiano
It was hard. I think a lot of it was I had Tristan. So I was so focused on him.
- [06:47]
Jessica
And he was one and he needed you.
- [06:48]
Jessica Troiano
He was little. He's a funny kid. You know, even as such a little age and just inquisitive and I really just had to keep my eyes on him because he was so busy. I tried really hard to just focus on any positive news. I remember getting ultrasound pictures and thinking, these are the only pictures I'm going to have. And just getting rolls and rolls and saying you print out everything. And just really trying to have any time that I could bond, you know, because I'm kidding him. I am a pretty upbeat person. I'm pretty happy. I tried to continue with that as much as I could. I had my moments where obviously I broke down at that point. I also did start seeing a therapist. It was overwhelming at times, so I sometimes pushed it to the side.
- [07:38]
Jessica
I don't have any, like, percentages or anything. I feel like most of the families that I know or talk to, the child with the medical issues or the special needs, oftentimes, for whatever reason, is the first child I don't like. Again, that's just in who I've encountered. Jake, for us, was the second child. Very similar to your story. Ethan and jake, 15 months apart. Like, as you talk about that, like, I understand that. And it's just a different pregnancy anyways, because your first pregnancy, you are pregnant and you know everybody, they give you seats and your husband caters to you, and you can eat whatever you want. And, like, it's like the biggest deal. By the time you have that second pregnancy, you have a toddler, and it's wild in some ways, I can see how that could be a really healthy distraction. But were you also, in some ways, really attuned to something being different? If you didn't have the doctor say, whoa, this is going on? Did it feel different?
- [08:38]
Jessica Troiano
It did not feel different. I think the only thing was he was so little the first time. It was like, oh, you're pregnant, and everyone's excited and happy and like you said, kind of catering this one. When I would meet people that knew us, not immediate family or things, but people who had encountered us and knew of us or whatever, and they were like, oh, you know, I heard you're pregnant. And I'd be like, yeah, and then be at home. It was a very different attitude. I was able to be a little bit more open with my emotions with my husband. Most of it was just sort of a, well, this is what it is. So I have to be in this moment right now.
- [09:16]
Jessica
So you mentioned the microcephaly, and then he has 15 different diagnoses. Yes. And one of which is very rare. And I think you had said this, he's one of only 13, 15 people who has it. So can you talk a little bit about his diagnoses? You don't have to go through all of them, but, like, explain to the audience what microcephaly is and just kind of what his bigger issues are.
- [09:37]
Jessica Troiano
Yes. The very first thing we had been told after he was born again, they're doing test, test tests, and they're just like, we can't find anything. Actually took three or five years. In truth. I don't remember when we were Able to find the PhGDH deficiency. So it's PhGDH deficiency. Very little research on it. The amazing thing is the research that was done on it was done at Boston Children's Hospital. So it's very local. I've talked and met with the other family who actually had the daughter who was the subject of all the research, really.
- [10:10]
Jessica
Okay.
- [10:11]
Jessica Troiano
So that encompasses much more. Again, we waited years for that diagnosis. We ended up getting it only because the company who was doing the exome sequencing at the time, it was not a common thing. That was like the highest you could do as far as genetic testing. It was more research based. And we were lucky enough for the company to say, we're not gonna charge you for it. I had heard about an epilepsy panel that could be done for genetic testing. I talked to his neurologist about that, and he said, this is not just epilepsy. Epilepsy. Let's try to get one more time the full panel. So that's what narrowed it down. Jude's diagnoses overall, like I said, like, it's head to toe for him. When he was six days old, he had his first surgery. He had the G tube placed. He had a soft cleft palate, so he could not actually swallow anything. So that's why he needed that. He was just losing so much weight. The pH GDH deficiency is the seizures. He has tonic clonic seizures. He has the corpus callosum, which is the bundle of nerves between the hemispheres of the brain. They thought they were not there at all. They called it complete agenesis of the corpus callosum. Actually, it's diminutive. It was so small. It is there, but it does not connect the two hemispheres. So developmental delays, also associated with the serine deficiency. He does have, because of that, again, kind of the majority problems, I'm gonna say the major diagnoses are because of that. The epilepsy is a side effect from it. The developmental delay is as well. The microcephaly is as well. All because this amino acid, serine, which Jude does not produce, would help with those things developmentally. And he never got that.
- [11:54]
Jessica
We talked about this when I was at your house. So our bodies make that naturally.
- [11:59]
Jessica Troiano
Correct.
- [12:00]
Jessica
This I thought, was fascinating and kind of takes us down that. Yeah, know, healthcare journey or whatnot or insurance you provide him with. Is it like a natural supplement or is it of the sarin?
- [12:13]
Jessica Troiano
Of the serine.
- [12:14]
Jessica
Serine, yes.
- [12:14]
Jessica Troiano
So the serine, it's a powder. We get a powder. There are two serines this is the L. Serine Insurance does not cover it because New York state does not recognize it as a metabolic condition. And if they did, then it would be covered. But I've fought this. And you know, sometimes so because most.
- [12:34]
Jessica
Bodies make it, they don't identify, they just don't see it anymore.
- [12:37]
Jessica Troiano
It's a supplement is what they say. And I say, well, I liken it to. Well, a diabetic who does not produce insulin can get insulin because they do not produce it. This is the exact same thing. Jude does not produce serine. It's a supplement if I wanted to take it.
- [12:52]
Jessica
Yes, exactly.
- [12:53]
Jessica Troiano
It is not a supplement for Jude. This is a necessary life saving med. They will not cover it. I was told I can talk to.
- [13:01]
Jessica
My congressman because you've got a lot of free time.
- [13:03]
Jessica Troiano
I will just pick up my phone and get right on that, Add it to the list.
- [13:08]
Jessica
Doctors insurance. Like we live in this world where we need them to help us. I used to be a teacher, right. And I would say I was a special ed teacher. And you know, when you deal with fourth and fifth graders, right, all the time it's like, that's not fair. So and so gets this. And I would always say fair is not that everyone gets the same. Fair is that people get what they need and that looks differently. And this is that, right? This is the fact that we have these rare kiddos that don't fall into these guidelines and into these check marks. And the fact that we don't or that we don't have a system in this country that takes care of them. You know, it's not a handout, it's not anything. It's exactly like you said, if I wanted this, it's a supplement. He needs it to stay alive. And then it's this constant battle of putting the onus on you to do it. Well, if you want it to be different, then you fight to change it.
- [14:00]
Jessica Troiano
Yes.
- [14:01]
Jessica
As opposed to anybody else.
- [14:03]
Jessica Troiano
I agree. And I see that across all of Jude's medical needs, we actually also just had and tie this in his oxygen. I got a call saying it's not covered anymore. That was incorrect. But again, the company that's supplying it says we need to come pick this up January 21st. And I say, well, he needs it. He just had a seizure Christmas Eve. I needed to give him oxygen. He had an upper respiratory infection, needed it. I'm giving all of the reasons. And they're saying, well, he doesn't need it 24 hours a day and on room air. It Needs to be below 88. So these are pretty specific things. I'm making phone calls to every single provider and person that I can to help. And in the end I reach out and they're like, well, that's not quite correct. And said, we do cover the insurance. Like, we cover it. Let me call the company. The company says to them, oh, no, that's not what we said.
- [14:57]
Jessica
Of course not.
- [14:58]
Jessica Troiano
I said, yeah, well, it kind of is, but okay, again, same thing. I am making sure I'm getting his seizure meds on time. Last night I get a call from the pharmacist. His Keppra. Jude's been on Keppra since he started having seizures at 1 years old. We have adjusted doses, but he's been on it forever. He said, it's not getting put through. I have to. It's flagged. I have to call cdphp. And I said, well, why we do this? I mean, this is easy.
- [15:25]
Jessica
For 12 years, this is easy. Yeah, yeah, yeah, this is.
- [15:28]
Jessica Troiano
So I don't think I'm too early and I understand if it's. You can't fill it every week, but.
- [15:35]
Jessica
But you're like in the window.
- [15:36]
Jessica Troiano
I'm like, well, he's like, no, no, you are far beyond where you can do it, actually. So it's just they're having a problem now with this and. And it's harder and we have to make phone calls. And I'm like, this should not be right. I feel like there's so much with insurance along the way that we do have to fight for. We have to justify. And we shouldn't have to justify.
- [15:55]
Jessica
Our trajectory's not changing. Like, Jude is beating the odds and he is 13 and it's amazing. But he's not gonna wake up tomorrow and not need his meds.
- [16:05]
Jessica Troiano
No, he will need.
- [16:06]
Jessica
He needs these. Like, nothing's changing the parameters of, oh, we need to check this every month or we need to make like, I get that for some, right? For sometimes you have an illness, that there is a cure or that there is, you know, a set group of meds that you do for a set group of time and then you see improvement. This is not that.
- [16:24]
Jessica Troiano
No, like you said, it is forever. Like, I shouldn't have to every single year justify that Jude has a disability and should get Medicaid. No, it's not changing. This is a permanent condition. We do 24 hour care for Jude. We work very hard to keep him alive. We shouldn't have to fight for that. We shouldn't have to work so Hard because we're working so hard on a day to day basis to just have him have the most normal and happy childhood he can have. He's 13. Obviously there are some just restrictions that he cannot do. But what can we do to make sure that he is getting the best, the most care, the happiest life that he has? For as long as he is here, it shouldn't be. Well, I have to spend my energy in getting appropriate healthcare for him.
- [17:11]
Jessica
I think that's one of the things that people don't understand. And when I say people, I mean those who don't have the Juds or the Jakes or any, you know, any of these other, you know, they call them rare kiddos now. Like, I didn't, that wasn't kind of a thing when Jake was around. But that feeling that you just sort of spoke about, it is a more than full time job to keep your child alive. The toll that that can take. Right. Like, because at the end of the day we say it very casually because we know what we're doing, but there's nothing casual about it. It weighs on you and it weighs on your relationships and it weighs on your marriage and it weighs on the way you parent Tristan.
- [17:48]
Jessica Troiano
Like, I think that's why I was excited too, to come on to say, you know, people don't really understand and they couldn't unless you are living this, they can have empathy toward it, they can feel sorry for you, which is.
- [18:04]
Jessica
Its own thing, right?
- [18:05]
Jessica Troiano
Yes, exactly. But until you are living this day to day, you can't understand it. And I think the biggest thing and the first thing that happened was my relationship with Alex changed. Alex has said in the past when we've been able to work through this more, talk about it more, was I was prepared to help you as a grieving mom. I was prepared to not have our baby come home. He was born and I took it very differently. I was just full of joy. I was just like, he is here. I am keeping him as long as I can. Alex kind of went the opposite and thought, what does my life look like now? In truth, that didn't. It didn't occur to me. It didn't occur to me. And like I said, he really was like, I'm having a hard time with this. And at the time couldn't articulate that. He really shut down and he said, you know, I just didn't know what to do. I thought of all the things very quickly of, we are not gonna be empty nesters, we are not gonna send our kids off to college and to get married. And we are going to have Jude with us forever. He had the foresight to understand how much it would change where I did not. And I think, again, my personality is just so, like, happy and upbeat for everything that I'm like, yay, he's here. Look how cute he is. What's the next step? What's the next thing? Let me work on this.
- [19:26]
Jessica
But he could see the hole and.
- [19:27]
Jessica Troiano
He could kind of see it bigger at the time because of that, in the beginning, he really did pull away a bit. I felt like I have Tristan at home that I'm trying to take care of. Jude was in the NICU for a month after he was born. In truth, they were trying to just figure it out. They really still didn't know anything. And so we were just working through that, getting him to a healthy weight, you know, all the things that you'd be doing, all the things. I'm going back and forth to the hospital trying to take care of Tristan, trying to take care of Jude. I'm waking up to pump all the.
- [20:00]
Jessica
Time, which is such a. So hard. Anyways.
- [20:04]
Jessica Troiano
Yes. And one thing. When you're at home, right? And you can just have your baby.
- [20:08]
Jessica
Roll over and there's your baby.
- [20:10]
Jessica Troiano
Okay. When you're doing this alone at home, knowing your baby's in a hospital room, scared and worried, is he by himself? Is he okay? Is he crying? Is somebody with him? That's a very different sense of everything. Yes. It was so difficult for me and Alex for such a long time.
- [20:28]
Jessica
What do you think changed? I think as mothers, we get that extra time. Right. And you sort of mentioned that earlier, like, you're carrying him, like, and it's. Obviously, it's different, but they're part of you. Like, you sort of have this way of just. You're getting used to it and you just are protecting. And they're part of you. They're, you know, so it's. I don't wanna say easy to come to terms. Cause I'm not minimizing what you had to come to terms with, but, like, the idea of taking care of your child is just. It's an extension once they're born. Because you're already doing it.
- [20:58]
Jessica Troiano
Yes.
- [20:59]
Jessica
And I think for fathers, it can feel very different because they're, you know, we've got nine to 10 months of where we're. We're growing a baby, you know, like. And they're just watching it, and I can see that. I also think it's. It's and this is gonna, this is a hard question to ask, but I'm curious about it. So he immediately is thinking of that life that you are not gonna have. Right. And we talk about that in the show. You know, when before I even started this podcast, I didn't know it was a thing. But there's that idea of ambiguous grief, right? Like that you grieve this life you thought you were gonna have. Once I learned that term, I was like, I had ambiguous grief Jake's entire life, you know, like, you know, from when he got sick on, like you always look at this other piece. So he could see that right away he kind of was in that stage, it feels like. Or in that feeling. Did you ever think of the alternative though? Because then the alternative, right. Is wait, maybe we can be empty nesters and that's a different loss, right?
- [21:54]
Jessica Troiano
Absolutely. I mean, I guess the biggest thing is because this diagnosis is so rare, we do not know how much time we have with him.
- [22:02]
Jessica
Which is kind of a blessing and a curse, right?
- [22:04]
Jessica Troiano
Both. Yeah, absolutely. You try to take every day as I'm going to do this on a daily, you know, just like live life to its fullest. Every day is a special day. All those things kind of think of and you do try that. And things fall into a very easy pattern. There are some just things that are common of every family you're going to have. It is not unique.
- [22:26]
Jessica
I think that's an important point too because I think sometimes people look in and they think everything is so different. And some parts are like, no, hey, I'm a mom of two teenagers. One looks a little bit different than maybe your two teenagers, but it's not as different on every level as you think. No, I think that's an excellent point.
- [22:41]
Jessica Troiano
Yeah, I think that's the biggest thing I've learned too, and you know, wanted to share is that yes, you have these differences because hey, most people are not still having to pick up and carry their 13 year old and have diapers in the house, aside from the medical equipment that we have scattered throughout the home. But my day to day looks pretty similar. I'm just. Okay, we're getting ready for school, you're off to school, you're back from school. We're gonna give you, you're getting a tube feed, you're getting a snack. Yeah. Okay, now it's bedtime, bath time, bedtime, everybody go to bed. The big difference is the medical part of it is again, Jude, we do not know how long we have. Jude and I take every day as he is with us, I am planning on keeping him here with me always. I want him to stay home with us always. I don't want to eventually have him be in a home. I am so terrified of dying before Jude. I don't want him to be alone. I just am feeling like, you know what? No one can take care of him the way I can. No one can love him the way I can. It is terrifying. I try not to think about it a lot.
- [23:52]
Jessica
It can get dark.
- [23:53]
Jessica Troiano
Yes, a very dark place. A very sad and scary place. I do think about it. I do talk about it a lot. I am very open with most people. As I said, I see a therapist. Alex and I see a marriage counselor together. Alex also sees a therapist. I think that's important for us. I know it's not right for everybody for us. This works. I need every month to talk to mine, to be able to say, listen, this is how I'm feeling this month. Especially if something has happened, especially if we've had sicknesses, big seizures, hospital emergency surgeries. Because I really, truly, when I think about my life without Jude, I can't breathe. I don't know how I'm going to handle that. I also get scared of what does that mean for Tristan? How does that make me as a parent of Tristan, when Jude goes again? I try my hardest to look at it as he's going to be with us forever. I also look at the alternative of, you know, what if he's here? Maybe Jude will do okay and want to be away from mom and dad a little bit. Maybe he will want to go and do a home somewhere. I don't want to take that away from him. I don't want to pre plan our whole life, his whole life. But it is something I think about often. I think about how scary it is to have to even say out loud, like. Like, I hope my son does not outlive me.
- [25:20]
Jessica
It's terrifying. And I know that feeling so well. Right? Like, and I've told the story, you know, we did not expect Jake to pass away, right? Like, we had those same kind of thoughts that, you know. And when you say that, it kind of takes me right back, right? It's that fear of if he outlives us, then what's gonna happen? And does the burden. And I always kind of hate using that word, but it's kind of the appropriate word. Does that fall on the brother? Right? Does that all of a sudden, are we dictating his life? And. And what does that look like? And what are the changes you need to make. And, you know, sometimes other moms or parents will say, like, oh, every mom worries about these things. And every mom worries about, like, what if something happens to their kid? The difference being that it's a very real possibility for us. It's not just the anxiety that people have or the protectiveness. Like, yes, I think more people are riddled with anxiety than ever were before. So they worry about things that didn't have a name before. But your worry is very different than another mom's worry. I want to shift this a little bit because one of the things that have always stood out to me is every time I would be by or we would talk about anything, you guys were always doing something. And I love that and I think I connect with it. But I think it's an important part of our journeys, our stories to share. Because I do think sometimes people think you've got this, chronically ill, special needs. Like you said, likely not gonna walk, likely not gonna talk, can feed himself. And people think that is so limiting. And yes, in some ways it's limiting, but not in all ways. Like, I think you were like, in a bowling group. You were in a. You're in so many groups. So can you talk about that? Cause I hate using the word normal. And I was trying to. I'm here trying to think of a different word. And I'm just gonna say it, but, like, you normalize the situation. So can you talk about that? Cause I do think that's such an important perspective.
- [27:02]
Jessica Troiano
Yes. And I have tried very hard to create that typical family style with Jude, not limiting him. Right. That's the biggest thing I look at is I don't see it as. I am not pushing him to do things that are unsafe or that he absolutely is not able to do, but let's do this. So, yes, we do the Miracle League and we go bowling. And they offer so many different sports. Some Jude's interested and some he is not. And I am so happy that he's just like, I don't want to play football. You know, like, okay, you don't. We do the YMCA Circle of champs. And so every month they have an event with a lot of other families with either life threatening illnesses or just medically complex. So I have found, like a little tribe of people who really understand. Right. So you don't have to explain yourself if you're just like, oh my gosh, this was the worst week. We were in the hospital. We did this. It wasn't a. Oh, my God, you were in the hospital, it's just a. I get it. What can we do? You know? Do you need anything? Do you just need a hug? Because we've been there, and so I think that's, like, the big, important thing. We also are involved with the Epilepsy Foundation. They have the kids crew, and so we just had a dance party. Jude loves to dance. They do things as well to try to get the kids together again. That's interesting for me because I don't know as many families who have kids with epilepsy. To be able to connect on that level for me, is great also for Tristan and Jude. So they do some fun activities that we really try to make sure that we can do every couple months with them. We're involved with Hands and Voices, which is also a local group that does for deaf children.
- [28:45]
Jessica
Okay. I wanted to ask you this question. One of the things you were talking about got me thinking about it when you were talking about at the Y and being around families that understand and not having to explain and not having to deal with the like, oh, my goodness, I don't know how you do it. I always feel like people are like, oh, tell me what to say. And it's hard to tell people what to say. And it's hard to know even what to tell people. That's one of those things that's exhausting. Right. Because our life is so shocking or sad or all of these things to other people. But to us, it's just our life. Right. Like, and it's like, you wouldn't say that to someone else that has a normal life. Why are you saying, like it to us? Right. Do you have any, like, if you had to pick, like, your number one. I don't know if it's pet peeve or a takeaway for someone, I guess, when they see you with Tristan and Jude, or when they see you with Jude, like, what do you not want them to say?
- [29:35]
Jessica Troiano
A lot of the people that are in my group of friends are people I have known since high school. I feel like I've surrounded myself with some really great, you know, people who are there to support.
- [29:47]
Jessica
Yep.
- [29:48]
Jessica Troiano
I don't mind too much when people say, like, I don't know how you do it, but that is what people say the most. And I'm just like, yes, you do.
- [29:56]
Jessica
You would do it, too, if you had to.
- [29:58]
Jessica Troiano
You would do it. You would probably do it. And that being said, I do try to realize, like, people truly are saying, I don't know how you do it, because I don't think I could do it. I think that's the biggest thing, though, and probably the most common. I try to take that only as a positive. Right. I mean, again, I think it's important.
- [30:16]
Jessica
Yeah.
- [30:16]
Jessica Troiano
I think I try to really have really a life of gratitude, of like, okay, well, you know what? I have to see the positive in things because I could very easily look at everything and see only the dark.
- [30:30]
Jessica
You're impressed with what we're able to do in this life. And why can't you say that? You know what I mean? Like, because you are looking at it and you are seeing the hardness, yet we're normalizing it and we're doing it with. I was about to swear, but I'm not going to do it, like, with a goddamn smile on our face. Right? Like, and we're living our best lives and we're giving our children the typical one and the not typical one. The best, best life that we can. And it's unbelievably hard, but we're still doing it. And sometimes I just wish people could just say that instead of the, I don't know how you do it, say you do a great job.
- [31:04]
Jessica Troiano
Instead of. I think the easier way for me to answer that is instead of like, well, what don't you like people to say? It's what do I wish people would say?
- [31:12]
Jessica
Yes, I think that's right.
- [31:12]
Jessica Troiano
Yes is okay. I wish more people would be like, wow, Jess, I see you write that validation. How hard is this? How much are you putting in? I can tell that you are giving it your all during the day and you're crying at night and you're not sleeping and you're worrying, but you're holding that together because you have to, because you're a mom and because you want to, you know, Choices. Yeah. I don't think people get it. And so when they do say, like, that of, you know, how do you do it? I think that little kind of qualifier of like, wow, you're doing it makes such a difference. And that's what I appreciate more.
- [31:54]
Jessica
Thank you so much, Jess, for being on the show. I have really enjoyed this conversation. I'm just grateful. Thank you.
- [32:00]
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.
- [32:08]
Jessica
Maybe we'll have a part two.
- [32:09]
Jessica Troiano
I really appreciate you having me on here and getting to share a little part of my story.
- [32:14]
Jessica
Thank you. I want to thank Adirondack Trust Company and am sure Insurance for sponsoring this episode. If you really like this episode. Please 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 and the stories we want to tell. Thank you so much for watching.