Oh, yeah, girl.

You hear a lot of no. When you have a child like our children. Yeah, you hear, no, you hear, they can't do this. You hear, you have to fill out forms where you're like, nope, can't do that. Nope, can't do that. You showed up, both in the form of saying yes. And then you literally showed up hospital. And it felt like, oh, this is her community. These are the people who are going to be there for her.

Jake's help from heaven. It's our nonprofit that is dedicated to creating opportunities for those with disabilities to thrive. That was Hillary, Esme's mom. Esme has a host of medical challenges. She is yet undiagnosed. The thing that we talk about a lot in this episode is this idea of resiliency. What I loved about talking with them was just reminiscing about all these different ways in which Esme has shared with the world what her needs are and how Hillary has really just worked to meet those needs. Sometimes we think that, oh, that child is sick, or they don't understand because they don't speak, or they can't communicate like everyone else. Esme shows us all that that is not the case. And she gives us so much inspiration. And I think this conversation really shows the world all that can be. 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. But first, it's time for our review of the week. This review is coming from Apple Podcast. I'm looking forward to following this podcast and seeing the lives it will touch.

Grief comes in many forms, and there is no roadmap. I think Heather and Brian have done an incredible job at navigating the journey for their family, as well as helping others find their way. Their family is an inspiration through the love, grace, and hope that they share with the community. I love that one because I hope that that's what people think. I think that we are just living our lives, but it's nice that people are finding the work we're doing to be helpful and to be inspirational, and it just feels good. And don't forget to leave a review on whatever platform you're tuning in on today. I am super excited to be sitting here with Hillary. Hillary, otherwise known as Esme's mom, has been part of the Jake's help from heaven family. I want to say almost since the beginning, I think very early on, we started working together, and I'm just really excited to have you here with us. Can you tell me a little bit about you and Esme?

Of course. So thanks for having me. I'm really excited to be here and have this conversation. And my favorite topic is Esme. Right.

Well, it should be. She's awesome. She is.

She's the best person I know, so I'm always really happy to talk about her. So Esme is. She's going to be 13 next week.

I can't believe it.

I'm going to be the mom of a teenager.

I was going to say a full blown teenager.

And es is the best person I know. She's super funny, super smart, really goofy. She has a sense of humor that I just can't ever quite get over. And because she's nearly 13, she thinks I'm really annoying right now. But there were times that she thought I was pretty cool.

Well, it might come back, but you're in trouble for a few years.

Yeah, I'm looking forward to that. And as also is nonverbal, although she uses an eye gaze device to talk.

And I definitely want to talk about that more as we keep going in that, because the way she works, that is just amazing.

Yeah. And her sense of humor comes out with it so much, which is really fun. She's non ambulatory, so she doesn't walk independently, save for a few times that she's taken some steps and surprised us. She's 50 pounds, so she's a tiny little girl. She's been tube fed for basically her entire life because she had cardiac and respiratory arrest at three months, which came about because she was aspirating her food. And she has, really, a host of medical issues and developmental issues that we've been dealing with pretty much since day one. I tend to not like to talk about those and not focus on those, but of course, it's part of how we understand how extraordinary she is because she's all the things she is while battling with those.

And that's what I always find so amazing. Right. And I used to say this about Jake, too, is the resilience that our kids have, and all kids in their own right have things that make them spectacular. But I do always think there's a little something extra when you are battling the things that they battle. And I sometimes think of myself, right. Like, if I was battling a quarter of what Jake did or what Esme did, would I be as willing to get up every day and deal with it? You know what I mean? It's pretty remarkable. So can you talk a little bit about when you learned that Esme was going to have some challenges. Like, when did you first know?

Yeah. So it's funny, I get asked that question a lot, and, like a lot of things with Esme, the answer is a little complicated. So there were signs when I was pregnant that there maybe it may have been some things going on. We had an amnio at the time. The testing was somewhat limited. I can now say definitively that even if we had the testing that we have now, I'm not sure that it would have been any more insightful. Up until that point in my life, I was pretty type a. And I think if you had asked me, I would have thought I would have been very nervous from the 20 week ultrasound and the amnio all the way through to when she was born, and I wasn't, I was like, she's fine. Everything's fine. And then the day she was born, I had a very uneventful labor, as much as such a thing. Labor?

Yeah.

Really quickly after she was born, the midwives, I heard one of them say, turn up the lights. And she was blueish, not breathing well, not really making much noise, and I think, most markedly, I realize now, just really floppy. They took her into the nursery and decided pretty quickly to transfer her to a NICU.

Okay.

So at that time, it was clear that there was likely something different about her. Again, contrary to my previous personality, I was kind of like, no, she'll be fine. Everything's fine. She spent a week in the NICU, came home. If I had had another child prior to her, I think I would have realized how remarkably different she was. Her tone was very poor. I used to have to wake her to feed her.

Okay.

And then she would just throw everything up. And she proceeded to get less and less healthy seeming. And it culminated in, like, it wasn't.

Going in the right direction.

Yeah, it was not going in the right direction. And we sort of had a culmination in a day here, actually, in downtown, where I had taken her out. She really seemed bad to me, but I didn't know what to do. And she wound up having a cardiac arrest here at Saratoga. Hospital got her there really just in time. She was in respiratory failure, I would say, as I walked through the door of the ER, and I have the answer to the question that ran through my mind. It's so funny how these things are. I asked myself, is this when you yell for help?

Like, do you walk through what door.

With your blue child and you yell for help? They were able to figure it out pretty quickly, and we were brought in. And her life was saved that day. And that was really the point at which I knew that we were in for a really long road.

Hey, I wanted to take a break from our regular content to talk to you about one of our sponsors, Adirondack trust, and their insurance company, Amshire. I'm going to tell you a story. When Ethan was in elementary school, Adirondack Trust would come into the classroom and they would do a program about how you could open an account and how, as a student, you could open an account with $1. Ethan would come home and kind of talk about that. And we didn't really think about it again until he had his first paycheck from working. And he was like, I have to go to Adirondack Trust and open up an account. So we went in. I was like, ethan, you should deposit your paycheck. And he very proudly said, no, I don't have to do my paycheck. I can open this account with $1. And that is exactly what he did. We walked in, we opened it. It was kind of a big day for us. And as we were getting ready to leave, the president of the bank actually came down, shook his hand, and said, thank you so much for your business, Mr. Stradder. It was such a great moment for him.

It was such a great moment for me. It is just one of the many ways that Adirondack trust goes above and beyond. When it became time for me to open an account for Jake's help from heaven, there was no other bank that I would consider. I went back to Adirondack trust because they are the ones that go above and beyond, and they were there with us. They do all of our banking needs for Jake's, for Ethan, and for us. Visit adirondacktrust.com and see how your money can go above and beyond. Member FDIC there's something about that moment right when you realize it, and there's something about looking back on before that moment that it's not just you that had that, oh, everything will be fine. Or, no, we're good. We're good. We got this. I think everyone I've talked to has had that. There's a journey for us, too, to figure out. And looking back, as they say, hindsight is 2020. You can look back and say, maybe I should have known, or maybe if I'd had someone else or any of these things. But there is. I think that as a mom, your job is, we think we can do it all in our kid and make it okay for our kid.

And sometimes there's that moment where you recognize, okay, I can't do this. This is bigger than me, and we need to figure out how to do this going forward.

Yeah. And for me, that moment, I have to say, was very much. It was a turning point, because prior to that, my life looked a certain way. Things had gone relatively easily straightforward. It wasn't perfect. I had no reason to learn anything about healthcare or medical. Any of it, the medical world. But I knew in the moments that surrounded that event that I would never be in that position again. I would never be uncertain about what to do, uncertain whether I did all of the things that I could do. I just would never be there again. And that meant everything she needed, every piece of joy, every opportunity, it would be in front of her. And I didn't know what that meant, really. But I can say we'll be coming up on 13 years since that day. And I know that that has been the orienting force of my entire life.

It's life changing for them, for sure. It's a pivotal moment for them, but it's a pivotal moment for us, too. And this is a little dark, but I remember know there was so much when Jake passed away that was just obviously know. There's no other way to sort of describe that. But also, a lot of people assume that because he had such challenges that we sort of knew he was going to die. And you don't know your kid's going to probably, you know that your journey is different. I know that Jake's journey was certainly different than Ethan's journey, but that doesn't mean that I was ready for his death or expected his death. It was completely unexpected. It just kind of hit. And I remember at his funeral, Brian gave a. Like, I didn't leave his know, I basically just sat next to his. Like, that's where I was for the entire funeral. And I remember Brian kind of went through and was talking about people, and he was in tears, but he said something about me, essentially. That was like, I know that you did everything. And he said the amount of time and you kept him alive for as long as he was, and you gave him the best.

And it just reminds me of what you say, like, that moment, because, you know, Jake was healthy the first eight months, and then he had that seizure, and then his life changed. And I knew once we walked into Saratoga hospital and they didn't know what to do, I knew it became my job to get him to Boston to get this figured out. And I never looked back. I advocated to. And, you know, I mean, I'm speaking to the choir here, but it's, insurance isn't going to cover anything, and then you have to fight with insurance. And I had a job at that time, and I had to quit everything because my job was Jake and that 100%, and I have zero regrets of that. It's a full time job keeping your kid alive. And not only keeping your kid alive, but giving your kid those chances.

It's. What's so important is it isn't enough to keep them alive. It isn't enough to keep them alive. I want to give Esme a life as big and bold as she is.

Absolutely. And people don't understand that. And those are the people where sometimes you almost get violent. I'm not advocating for violence, but sometimes I'm like, how did I not punch that person in the face? They just think like, oh, should be enough, good enough. No, it's not. It's the same.

And, in fact, I think that kids like ours deserve to have joy cranked up to eleven because all the other.

Cranked up way high, 45.

So they're poked and they're prodded, and they're, they're seizing, and they're, you know, they're scared, and they can't say.

They can't.

The tag on the back of my shirt is itching me or my, you know, my shoes.

My shoes too tight or, like. Yeah. And I remember sometimes, like, you know, jake wore the afos, and sometimes I would take off the afo, and it would have been digging on him for the 4 hours that he was wearing it. And he'd have, like, a mark, and he couldn't tell me. And it had to hurt. There was no way it didn't hurt. And then you feel terrible.

You feel terrible, and you think about, I wouldn't have lasted 10 seconds. I would have thrown a fit.

Yeah. And I would have taken it off. Just been done. Yeah.

One of the things that I've always really appreciated about the spirit of Jake's is that it has that joy. And I think it's also really important that families who have lost their know, I've heard from other bereaved parents that no one says their kid's name anymore. It's like they don't exist anymore. And I think what you've done is the exact opposite of that. It's like you put Jake in every room. Jake's in every room, and he should be.

It is. It was always my biggest fear after he passed. Know, because you saw it right know? And honestly, sometimes, all these years later, people will say, oh, Ethan's an only child. Yes. Because sometimes it's easier, but it never feels good. It always feels awful. And I always go home, and I'd be like, oh, I did it today, and I'll tell Brian, or Brian's, like, you know, I've done that before, too, and it's a horrible thing, but sometimes people just make it hard. Or sometimes it just is hard. Right? Like, what do you say?

I don't know.

It's important for me to have him be in every room, because even sometimes, as present as he is, sometimes people just don't know. And sometimes I just don't want to talk about it. It's that balance of, I need to be able to talk about him, and I need to talk about the inspiration and why we do what we do, because otherwise, the biggest fear is that he would just disappear. I was trying to remember exactly when we started working together, and I don't remember how old Esme was, but can you tell me a little bit how you found out about Jake's? And then we can kind of walk down memory lane of all the different things we've done together. Yeah.

So I was trying to remember how we found out about Jake's. I think it was through our care manager. Okay. But it also may have been through.

Was I was like, was it through Heath?

Yeah.

And I was trying to remember if actually Jeff was already on our board or not. Okay, so Jeff was on the board. And so I think all of those ways, because we have worked with Kara Goki almost since the beginning, and then I think your connection with Heath was also sort of. So a couple ways you found.

Yes. And I can remember hearing about you and thinking, oh, okay, well, there are things we need. Like, I know there's all of these things we need. And thinking, well, I guess I'll apply. And it's probably not going to happen.

Right.

Because the things that you need for your kids are often not the things that people understand that you need. So in this case, it was an iPad, and I was really hoping to start communicating with her through an iPad. We went ahead and asked, and oddly, you said yes.

Go figure.

I think we had a scheduled delivery, and Esme wound up in the hospital. She was at Albany Med, and she was seizing, like, every 3 hours for days.

How old was she? That's what I was trying to remember. Was she was.

She would have been about three. Three, two and a half. Three. Because it was kind of the end of the really bad seizure stuff.

And I remember our board discussion around that because at that time, iPads were I don't want to say they were new, but it was hard for some of us to sort of wrap our head around how is this iPad going to help a two, three year old? How is that actually going to be something? And we talked about it, and part of why I love our board and the work that we do is we really kind of dig deep through that. So there's some people who are like, it makes zero sense. What is a two year old going to do with an iPad? And then we have, like, a speech person who said, no, actually, this is the perfect time to start. If you're going to do some of these kind of therapies and some of these applications that exist, it's the perfect time because they're open to it and there's ways to do it. But I remember the iPad for as was one of the first iPads we did. I don't think it was the first, but it was very early on. I don't even think we had a technology app yet. It was just something that was starting to come in, and we were trying to figure out if it was part of what we did.

And I'm so glad that, a, it is part of what we do, and, b, it was in those early days, and I think all three of us went and delivered it. I think it was Brian, ethan and I.

It was I remember feeling that, like, I don't want these people to meet me.

Like, meanwhile, we're very comfortable in a hospital. Yeah. All of us.

Hospital. Gross. Like, multi day hospital. Gross. And it was this moment of like, oh, no, this is the perfect thing and the perfect moment because it was a really difficult hospital stay. It was this joy, this wonderful, wonderful joy. And it was really meaningful for EZ. And I think it is hard to explain how unless hard now to explain how a two year old might benefit from an iPad. But at the time, she couldn't show that she understood cause and effect all that well. And so even just apps on the iPad where she could hit a whole area and show that she knew that she would get some kind of a reaction and have joy around that. But we also that was her first assistive communication device.

So I'm going to give a little bit of background now, just as we're discussing what Jake's is, I always refer to as Jake's, but it's actually Jake's help from heaven. It's our nonprofit that is dedicated to creating opportunities for those with disabilities to thrive. And we've kind of hammered around what our mission really is, and we're really focused now on that. And I think when you talk about some of the things with Esme, and even early on, like being able to just make a choice, those are ways in which we're helping people thrive. Jake's help from heaven was founded after my four year old son, Jake passed away. All of these experiences and all of these things resonate so much for, you know, the fact that even Ethan, Brian, and I went to deliver to you in the know, I jokingly say it, but we spent so much time in the hospital that it felt very comfortable for us. And I do think that that is part of what makes stakes hall from heaven a different type of organization and a different type of foundation. Let's go back a little bit about that first yes, that we gave you.

And then I'd love to talk about sort of the journey we've been on, because we're talking about when Esme was two, and now she's going to be 13, and there's been a lot of things that we've done together along the way. So I'm kind of excited to kind of go down that memory lane. But when you got the letter that said she was approved, how did that feel?

It's funny, the notion of a yes is really key. And I've talked about this with other advocates and parents. You hear a lot of no, right? When you have a child like our children, you hear, no, you hear, they can't do this. You have to fill out forms where you're like, no, can't do that. No, can't do that. And even in engaging the medical community, when you have a child that their diagnosis isn't clear or the things that might be done to help them aren't clear, you get a lot of maybes and you don't get many yeses. And so I'm not sure that I remember receiving the letter, that stage as was seizing so much at that point that I would not leave the house for weeks and sometimes not leave the bed for a day because she was just on me. Anything at that moment that felt broadening was important, and I think even more than that, anything that made me feel like as was part of a community, even though she was isolated in the ways that she was, was really, really important to me.

It's funny because in a different way, it meant so much to us, too, because for us especially. So we're talking probably, what, 2013? So Jake's was only a couple years old, and Jake had only been gone a few years. So all of that was very new to us. For us. One of the things when we started Jake's help from heaven, and we didn't know this was going to be a thing, but it was. It was that community, because when Jake was born, I don't want to say it was before the Internet, because obviously it wasn't, but it was like before Facebook as much. Everything was kind of new. I feel like it's so. Not so easy, but there's so many ways to seek out community and companionship. And even with strangers far, like, there's certain individuals that I follow, like this little boy, James, who's in that from the connection of having. Knowing other moms that have special needs kids or sick kids, and you kind of have this connection. When Jake was one, two, three years old, I didn't have that community. The community now is as important to me, I think, almost more because I didn't have it then, and I just love this opportunity.

Like when you said, esme is the best person, you know, I used to feel that way about. Know, Jake just never gave up and always just fought through. And I didn't have as many vehicles then as I do now to talk about him. And I just love that I can kind of continue to have these know.

I think there's something really important here about the idea of a community for a child that extends beyond their. Right, like, I feel like I know Jake.

Jake is my budy.

And it's something that, you know, obviously, it's always incredibly tragic when there's a child who's born and their life is limited in the ways that our children's lives can be limited. There's something bigger there. Right. And maybe slightly dark humor, but I always joke, well, there'll be more people at Esme's funeral than at mine. Right. She has this very big, expansive life, and it's a life that's bigger than most of us ever get to feel like Jake is. He's a member of our community. It's a way to extend his life. Extend, not his. I don't like the legacy terminology.

No, but it's keeping him present and keeping him. And I always say he is the heart of what we do. I've said before, there's a huge part of me that wishes I didn't have to do this at all because he was still here with me. It's his loss that has brought all of this. But that's exactly it. He has continued on in so many ways. He was the best boy I knew, and he's made me the best version of myself, for sure. I owe a lot of who I am to him.

And I think that's the part that people miss. Sometimes you hear, I'm sorry. Even when your child's still here, sometimes. I'm so sorry. Seeing a child as just the fact that their life was limited in a particular way is limiting of who they are. And I love that Jake is the source of such an important local and beyond local at this point, community.

No, me too. Me too. So let's talk a little bit more about the different things that over the years we have done with Esme. I always love applications from you because I do feel like you are at the heart of what is right. Like, people always want to say, like, will you cover this? Will you not cover this? And we are very much, fill out the application, make a case for it, give us what we ask, and we're going to sit around that table and decide. But it's not like, yes, we do this. No, we don't. And I love when people, and I think you do this really well, figure out what is that thing or that expense, or sometimes it's reimbursement because you're like, I took a risk on this, and now it's working. And now can you pay me back? Because I want to do it again. It's really finding those areas where you can make your kids life better and therefore your life better, like everyone's quality of life. And I feel like you've always done a good job of sending in these applications. And we're like, okay, what is this creepster crawler?

What is this thing hang underneath it? What is it? And then we're like, oh, I get it. It's going to work. Maybe it won't work, but it's worth a shot. Like, let's do this.

And I think that's really important, too, is these things fail sometimes, right? And actually, it's interesting because the creepster crawler was, like, this incredible success for a portion of time. And so, I don't know if you remember, but at the time. So Ez is like, I mean, this kid's on the move, right? Like, she's got stuff to do. And at the time, she could army crawl and then she would roll. We had just moved to a larger house, and so she got really good at army crawl. Roll and scoot and then roll. But she couldn't get herself up to crawl. I would experiment with like a big scarf under her belly and kind of like, see if I take some.

If you could let. Yeah, help. Like a sister.

And she could kind of do it. And so I was like, there's got to be someone must have invented this, and if not, I'm going to learn.

How to figure it out. Yeah, build one.

And I found this absurdity and it was like this frame over and then underneath the thing. And you strapped her in, looked a little bit like a medieval torture device unwield. And she hated it at first, and then she just would look at me like, why? I can do my thing alone. And then she slowly did it and then she refused to do it. And then she started crawling on her own.

Then you were like, it kind of served its purpose. It worked. And I think you returned it, or not returned it, but donated it to the equipment exchange. And we have subsequently, like, it's been used by a lot of other of our families and we had video because sometimes people would be like, I don't know what this is. And I'd be like, please hold. This is Esme using it and look it. And now she crawls independently. It's the other part of the smaller part of what Jakes does. But we do have that equipment room where we take. Sometimes people outgrow or no longer use, or like we kind of said, sometimes it just wasn't a good. It just didn't work. So we collect those things and then we offer them out to members of our community. And sometimes people use it for a trial. Like, oh, I'm thinking about getting this. Let me see if it will work so we don't go through this whole process and then find out it's not going to help. And other times it's just we'll have pts or moms or people just come be like, yo, can I make an appointment to just come see what's there?

Maybe there's something we could use or maybe something we could try. And I love that because as we all know, the equipment is so expensive and everything is so outrageous. And even if you're willing to pay the cost, it could take you six or eight or twelve or weeks to get it or eight months. I mean, some of the lead times are crazy. So to just have something where people can borrow it for the interim I think is great. So that was one of the items that for a while was very popular.

Esme started trend.

She did, and I'll stop calling it the creepy Crawley.

Well, you know, it's funny because her first gate trainer was from the equipment room. So that pony, do you remember the gate trainer? But it was like, with a seat and face forward, and there was a thing in front of her that she could put her arms on.

Yes.

There's a bunch of video of her in my kitchen scooting everywhere. And what really motivated her once she figured it out, was that I have an old fashioned kitchen from the. There's like a writing nook. Esme in the pony fit directly, like.

Hide herself, wedge herself in.

It's like, well, that's great, because that's, know, it's like a little space. And she got that before she got the Purple Gate trainer, which was her little one.

Hey, I just wanted to take a minute from this episode and talk to you about Saratoga Casino hotel. They have, as many of you know, there's Morton's, there's vapor, there's the casino, there's the hotel. But what you might not know is that they take one day a year, and they do this event that is called make a difference. They hold it as a luncheon, and on that one lunch, they give away $120,000. They pick twelve capital region charities, and they award each of them $10,000. It is unreal. It is so generous from the nonprofit standpoint, as a beneficiary of this make a difference. What I love about it so much is that the organizations don't have to do anything. So many times. Organizations have to fill out so many forms, jump through hoops, do all of these things, and we gladly do it because we're looking for funding. But Saratoga casino, hotel, they pick the charities, and they just ask you to come to lunch. They treat you to a great lunch. You can bring your board, you can bring your donors, you can bring your family. Everyone gets this great lunch, and then they give you $10,000.

It's unbelievable. It's so generous. Keep supporting them so they can keep supporting us. Esme is involved in a dance program in New York City.

Yeah, in Harlem.

In Harlem, where a group of dancers choreograph things specifically for a child with special needs. Right.

Well, they choreograph. What's really cool is they choreograph together. So they have a dance troupe that's sort of their standing dance troupe, and that's year round. And then they bring in twice a year for a week kids through this program they call the Dream program.

Okay?

That's right. All the dancers and there's pts and PT students all choreograph around the dancer's skill set.

It's amazing.

And that means all of the dancers. So no matter who the dancer is and what they can do, we're choreographing around their skill set. There's dancers who are neurotypical and are year round with the program, and then dancers with disabilities. There's one girl who aged out recently who, at the time that she graduated from the program, she had the ability to move one finger and her eyebrows.

Oh, wow.

And so she used one finger to move her chair, and she did a lot of really expressive eyebrow motions. And so all the kids did eyebrow choreography.

Oh, wow. That's awesome.

That's the kind of thing that's happening there. And it's at the National Dance Institute in Harlem. And as has participated for a couple.

Of years, I was going to say she's done it quite a bit. Right?

She has. She has.

You had a gate trainer. So there's the gate trainer at school that she.

From the equipment room, and then she.

Has her own gate trainer for the house.

Well, so what happened is she used, as you know, right, with equipment. It's so funny because you don't know what's going to work, what's going to.

Take, what's not right.

And so she had borrowed a gate trainer, totally different gate trainer from another student. And the week before dream, I was sent a video from her PT saying, oh, my God, she's using this gate trainer really well. And it was a reverse. The blockade was behind in the back.

Instead of in front.

And she was totally independently holding and.

Walking and taking steps.

And I saw it, and I was like, all right, well, she's going to dance camp next week, and there's zero chance that she's going without that gate trainer. And so I said, please, can we have it for a week? And they were like, it's someone else's, and so we can't send it. So I did, like, a rush order. All I could think is, she has to have this tool. And trust me, I've packed tools in the car to not even be taken out sometimes.

No, absolutely. You need to have everything that you could potentially need.

The really cool part about this week is they know her so well. She was traveling also with a caregiver named Mickey, and I had to work. So we're in Harlem for the week. I've rented a place. I'm like, eze's gonna be so upset, because normally I sit and watch rehearsal, but I had to work. And so I was thinking I'd work from watching rehearsal, and Ez wound up communicating to Mickey and Aggie, who runs the PT side of the program, to say that actually, she didn't want mom there.

Teenager.

And I was like, wow, this is embarrassing.

Rejected somewhere.

She doesn't want me. But what it was is she wanted to surprise me. So I was prohibited from attending any of the rehearsals. It worked out great. Mickey and Ez navigated the short walk to the place that I rented, and Ez got a lot of independence. And no one told me what to expect for the final performance. We went, you know, was told kind of approximately where to sit for the best view. The dance that was choreographed sort of around as there were other children in it. She came out first in her wheelchair, and it's like the kinds of stuff that I've seen her do, and it was wonderful. And then there's often a scene where she gets sort of, like, pushed off. She goes, she's caught in the wings, and some other stuff happened. And then all of a sudden now came as walking this gate trainer. And I've seen her do it, but it's a different thing to do it during a performance and do it on.

Cue and to do it in front of people and to just do it.

And to have the presence of mind think about that resilience, to say, okay, this is my moment. And this thing, this skill that I've acquired last week, I am now going to show off in front of a room of people, including my mom, who I'm surprising.

I mean, it's unbelievable. I remember when you sent me that video. I mean, I watched it probably six times in a row, because it's just unbelievable. To think back to that such. So sick in the hospital, seizing constantly two year old. And then to see her as almost 13, independently find this group, this program, and perform and do all of the things. I remember when you were telling me that you weren't allowed to go to rehearsals and that it was a surprise. Like, to have that kind of thing happen in ten years is just unbelievable. It's just so beautiful, and I just love it. I couldn't be prouder even from, like, it's unreal. It's so amazing.

And I think this is a really important point, right? That kids like Esme, like Jake, require an incredible scaffolding to be able to do the things that the other children take for granted, right? It's an incredible scaffolding. And when you can get to a place that you can make that scaffolding as invisible as possible so that that child is able to do what they can do on their own merits. They don't need to know that mom freaked out about getting a rush to.

All of the things.

They don't need to worry about that. And instead being given the opportunity to thrive in their own way without the anxiety of that structure. And it's part of what you do, right, is you help parents, regardless of what's going on in their lives, you help them get to a place where providing that scaffolding is that much easier.

Well, and you said something that I think is exactly what we try to do, right? A lot of times people want to talk just about the individual that we're helping, right? So just about the Esmes or any of the other individuals we work with. But so much of it to me is it's more than that, right? Because in this situation, here was a gay trainer that you knew she needed and you did the rush order and you're like, I'm going to have this here. And then you're like, oh, my God, it wasn't cheap. So then you submit to us, we reimburse you, because that sort of is how we can, in that situation, help. You're her mom, you got her what she needed. But then in order for us to support not only Esme, but to support you, we take that burden off, right? So here we're reimbursing you for the cost, and now you're back to sort of level ground, right? You can find a different thing to buy for her or whatever, because it's not like it's one and done ever. But if we can help in those ways, like the whole then community is sort of working better, right, because Esme's getting what she needs.

You're not then stressed or under the burden of the cost or of. Okay, so I spent this money on that. What am I doing next? Am I going to be able to help her with her next need? Because you know there's always going to be a next need, right?

Yeah.

And that, I always think is equally important as the support for the individual. It's just helping the family unit or the community unit around her be successful. And yes, always worried about stuff, especially with a medically fragile kid. But when we can take one of those worries away, then you can focus more on what you want to focus on, which is just the opportunity just to thrive. How can she find her way? How can she be most independent? How can she be happy? And that's always, I think it's not just about like, oh, the equipment we get in her hand, but it's about easing the burden on everybody so that then you can move forward a little bit.

And I think that joy, like the sparking of joy and just saying, okay, no, you don't need to spend all of your time thinking about is it this gate trainer or that one? Or is it this gate trainer or is it the beach chair or is it the bath chair or what is it that you're willing to. What's most important at a given moment? It returns it to the joy and it puts you in a place of. Yes. And then all of that feeds back into the community. Right. If she outgrows something, she stops using something. It goes back to the equipment exchange.

It'S happening somewhere else.

And it also allows the community to see more and more of what's possible from the asthma's of this world.

Absolutely.

She can dance. She can dance in her chair. She can crawl across the floor as dancing. She can walk with a gait trainer. Who knows what she's going to do this year. She may parachute in.

Who knows? World's her oyster.

And by the way, she did say that she needed more shoes. I think that was the exchange for the gate trainer. Mom, buy me more shoes. Shoes.

Let's talk a little bit more about the different things that we've done. So we've talked about the iPad a lot. We've talked about some of the equipment. Again, I'm shocked. She's not shocked, but she's going to be 13. She's a teenager. It's wild how time flies.

Yeah, it's wild.

But we have been kind of working together for 1011 years. It's a long time. So I'm trying to sort of think and certainly can't do this in order, but we did the iPad and along the way we've done a few other. I've kind of talked about how you have been so innovative in coming up with things that might make a difference. And I remember we did something with like nesting tables or stacking tables for stepping up. Yes.

So she was learning when she does stairs beautifully. And I think I have a video of her climbing when I didn't expect her to, climbing on those nesting tables. But they also just like, they're in her room and they're so sturdy in her playroom. We can use them to put her eyegaze device on. We can use them to pull her chair up and do different craft projects and things like that. And occasionally I also use it to climb up into things.

They're handy for everyone.

Yeah.

She was working with like an educator, Kaylee yes, Kaylee. And then I think we kind of helped with some of her pay, I.

Think, along the way, that's probably true.

Covid is a bit of a. Well, I feel for all of us, it's like equal parts ten years ago and equal parts, like, last year. Like, I have no gage of time, but talk a little bit about. You've referenced the eye gaze device and Ez's ability to communicate. And I know when she was working with Kaylee, like, she was making a lot of progress. Does she still work with her?

She doesn't, because now she's around. But yeah, as is back in school full time.

But I remember, because I remember that was another application, like, when it came in. It's funny, when applications come in, one of the things that I always do is I write a cover letter and it just kind of has the basic information. And for our repeaters, I write down everything we've done. I think the last application, I think it was a two pager, because the part of all. Well, part of it is that we've gotten older. So I've increased the font size to, like, 16 because I would do them at, like, twelve. And everyone on the board would be like, I can't read this. So that's a sidebar. But I will tell you, I think Esme's is the only one that goes to a second page, which is awesome. It's easier for me because I know so many of the families we work with, and I stay immersed in this world because this was such a big part of my world and still is. But for some of our board members, all of who are dedicated and committed and really thoughtful and review the applications really well, but sometimes they don't know how to process some of the applications.

And I remember it kind of was like pushing the envelope a little bit to be like, have them wrap their head around without seeing it, without talking to you, without seeing Esme in action, how can this be? So can you talk a little bit about her use of the eyegazed, her way to communicate and how she would do things with Kaylee? Because I remember you sent me some videos and I was like, this is awesome.

So the thing with Ez, I think, is always, I've known intuitively, and then in a way, that proved to me that Ez understood absolutely everything, like, at a very, very high level. And I think, you know, she proved to me, and I had to video it because no one would believe me, but proved to me that she could read by the age of four. She was reading sentences and answering comprehension questions with cards. She's brilliant. She does shut down, though, when she's not, you know, you can only be asked to identify the letter a so many times before you're not into it anymore. So Kaylee came into our lives during COVID We were able to hire her, essentially, away from a fifth grade classroom to teach Esme directly. And she came in cold, not knowing es, and just started pasta on the wall. A number of things that they worked on were really successful, like Ez was doing grade level math. By the time that Kaylee was starting to wind down because she was about to have a baby, and as was going back to full time at school, they would have fraction free Fridays.

So Fridays, they didn't do fractions, but the rest of the week, we were doing fractions. The walls are still covered with these big post it note stickies with all of the science and math and English that they were doing. Part of Kaylee's goal was to get her to use the eye gaze. Up until that point, she'd used it with me a lot, but it was mostly to tell jokes. There's, like, a bunch of canned jokes on the eye gaze, and there are a few that she really liked, so.

We would hear them all the time.

All the time. Maybe I'll tell you one later. But Kaylee really got her to start realizing that if she expressed a need or a desire, that it would be met within reason. And then as got really bold.

As she should.

So at one point in Covid, pre Covid, one of her favorite things was to go shopping. At one point during COVID she said to me and Kaylee, I should maul. Looks like old clothes.

Sometimes.

She sometimes is a little clothes to her.

Yeah.

A little poetic in her way, but she absolutely hears everything. Actually, Kara came by for a visit last week, and she was wearing a mask because she had been sick. And Esme said, health. Yeah. And she uses it at school as well. One of my favorite ones is for veterans day that they know. Does anyone know what a veteran is? And es, who used to get really frustrated because her verbal classmates would answer before she could. But she's like, she's fast now. So she said, soldier no more.

It's good, right? You got to love her. Soldier no more.

Soldier no more. Her word for dream, she couldn't find it in the talker, so she said, sleep. Think.

Oh, I like that. It's kind of brilliant.

She also calls it couching.

Couching is, like, my favorite. I'm very good at that, yeah. Looking forward to some couching later.

She's something else. And I really think having Kaylee there, as it'd gotten used to going to school, she was independent. She didn't want me to be teaching her. No, that was not good. And we saw that during COVID children declining with their therapies and their learning, because that's not the role of parents.

We at Jake saw. And I was trying to remember if it was a typical grant or if we. Because we also did, like, emergency grants during COVID That program started during COVID because so many of our kids, they weren't getting what they needed anymore. And to your point, parents couldn't fill that void and shouldn't have to fill that void. And it went on so much longer. And for a lot of our families, it went on longer even, because we have some families that have just this past year gone back to school because they were too nervous for so long because you're immune compromised. And then the vaccine, is it for you? Is it not for you? What was it going to do? Like all of those things, all of those concerns, and then if you're out in the public. And then it took a long time, I think, for some of our families to make that step back.

And the impact, I think, on everyone was substantial. But with Ez, she had a really hard time during COVID She lost 20% of her body weight in four months and wound up hospitalized. And I can't say exactly all of the factors that went into that, but certainly not being out of the home, having the stimulation, having the therapies. I mean, how do you do the work of two people, one holding her and one stimulating her when you're just one and you're trying to work? She had just gotten to the point of taking the bus every day to and from school because she could do a full day, plus the bus ride. And that was her favorite thing. Right, bus ride.

I remember some of those videos of her. Yeah. But I think along the way, too, we've just done some reimbursements of travel. And you're constantly. Well, not constantly, but you're often in Boston.

Yes. So frequently.

So most of her care is at Boston children's?

Yeah, essentially all of it at this point has been for some time. And it can be, as many families around here know, it's a lot to get there, settle know. I'm usually bringing a caregiver at this.

Yeah, we always used to say, too, because we always, on the application for travel, we like to know, and we have some families who go down and back, and that's how they do it, and they power through. But with Jake, we always went down the day before the appointment. You go to the appointment unless you're there for an issue that's happening. But if you're there for a scheduled three month visit, we kind of wanted him to be at his best because you wanted to have that dialog with the doctor and figure out if there was going to be a med change or something else to try. You kind of want them at their best. And if he was in the car for 3 hours and then went straight to an appointment, he wasn't going to be at his best. His routine is off, his schedule is off. He probably missed a meal, all of the things. So we always went down the day before, then we'd have his appointments, and then typically the appointments would take so much out of him that we would spend another night in the hotel and go back the next day.

So two appointments or three appointments could take three days, and it's expensive. So that's one of the things that we do like to kind of support families with. Take as much time as you need, stay where you can be comfortable. We have stipends we don't cover. If you're staying at the Ritz. We're not covering the Ritz. Oh, you're not covering the Ritz. We'll give you $150. Worth it. But you know what I mean. We try to make it like there's a food stipend. We try to make it so you can get the help that your kid needs at the best possible place. Yeah.

And I think what I like about that approach is every family is going to do it differently. Right? Like for some families, getting home and getting back into the bed that they know their child can sleep in versus trying to figure out how to navigate a hotel is going to be the priority. Sometimes that's my priority. Sometimes the priority is to spend the night. If we have an early appointment or if she has a sedated procedure, I have to figure out, because if she and I sleep in the same room, neither of us sleep. I need a place with a pull out bed and her inflatable bed. And then usually there's a caregiver, and they tend to not like to sleep on the floor as experience. Imagine that every family's needs looks a little different. A little different. And I don't know that we've necessarily talked about the work that I'm doing now, but I'm working in drug development for populations that are very familiar to us. That's one of the things I keep saying to my team about how we design the trials, is you build in as much option because what might work really well for one family isn't going to work for the next.

Absolutely.

Flexibility, it's choice. And then being willing to hear when something isn't going quite the way works for this family, and you receive an application and you're like, oh, that's an OD thing. Oh, this is why.

This is why we sit around the table and talk it through. There's no one right way to do this life. Right. This life of special needs and medical challenges, and even within the same life, it changes what's the way to do it.

Absolutely.

So we try to be really cognizant of that and trying to be cognizant in how we support and just how we say yes, because it's not our place to tell you what you need. It's our place to help you get what you need. All right, so let's talk a little bit about Esme. Now, you said she's almost 13, so where is she? Like, how is she doing health wise? How is she doing just in general? Can you give us a little update? Yeah.

So Esme, I think, I guess we haven't talked about, is functionally undiagnosed.

Right.

So we have multiple genetic mutations that we've been sort of finding over time, and none of them really tell the clinical story. So, not to say I've given up on it, because Esme's on the radar of some people who are still kind of trying to figure it out. But I think it sort of suits her personality that she's avoiding being understood in this way. So one of the things that's been really challenging, I think, is that there's really no clarity around what to expect. Not that there really ever is, but sometimes with a diagnosis, at least, you get.

There's like a journey, there's a yes.

And you have a range of possibilities. There have been times that Esme has been really ill, and I haven't thought we would get through. At the moment, she's doing really well. She's had a very difficult year, though. In April, her weight again became a really serious issue. She's very malnourished, and this is a challenge with some kiddos with her tube feeding, she just wasn't getting what she needed. So we had to do a really concerted effort to get her weight up.

Is she eating anything by mouth? No, she was a little bit through.

A period where we were working on.

Like, ice cream or something. Right. She liked her ice cream, if I remember correctly.

She would like an ice cream, like, a little bit. And now it's really clear how much she's aspirated. She's supposed to have had nothing by mouth for a couple of years. That's the other piece that we're working on right now is her lungs. Her lungs are pretty damaged from repeat aspirations. So just doing a lot of testing to try to figure out what's going on and address it in the best way that we possibly can.

Is this a new team of doctors that you now have, or is it some of the same team?

It's the same team, actually. Her doctor, Dr. Rosen, who's her GI in the aerodigestive clinic. So it's the clinic that works with Ent, pulmonology, nutrition, GI all together.

Okay.

Perfect. Is our longest standing doctor, actually. She started seeing Esme at ten months old.

Oh, wow. Okay.

She was our first visit at Boston children's.

Oh, wow.

When Esme started at Boston children's, Dr. Rosen told me years later she didn't think she would live the year.

Wow. The fact that we're here, oh, it's amazing.

It's amazing.

It is.

When you can't keep your kid alive on your own, you need these other people. They're part of a team, and it's not a team focused on just this one thing. It's, like, everything, every aspect, and they have to see every aspect, and you.

Need the doctors that it doesn't matter if your kid is having a seizure or having an episode. Sunday at 02:00 p.m. You need someone that is going to return your call at those times, and there's a lot of good ones out there. And so we always end this podcast with this little feature called Ask Heather anything. So go for it.

I feel like I want there to be, like, alcohol involved before I get. Typically there is, but I think, actually, while I might have a longer list, I think I'm going to lean into. What I would really like is to hear a bit more about drinking with your children and in particular, your dance moves.

Well, the dance moves are highly questionable, because I saw the video, and they're not great. In my head, my dance moves are much better than reality. But yes. So we just got back from my 50th birthday party. Not a birthday party, a birthday trip. And I knew I was turning 50, and I wanted to wake up somewhere new, and I wanted to have Brian, Ethan, and Serena with me, and in order to make that they're 18 and 22, in order to make that equally enjoyable for everybody. Serena's boyfriend came. They've been together three years. Ethan at the time was not dating anybody when we were making this trip, so he invited his friend Evan, who has traveled with us several times and we've known him a long time. And so we were in St. Lucia and it's this funny vibe and it's happened a couple times, but there's always been something where I just looked forward to having an adult child. Right. And just being able to. Obviously, I'm still his mom and still parenting and there's plenty of stuff to do in that end, but also just being able to sort of sit back and enjoy, like, relax and to share that with Ethan, honestly, was so much fun.

And with his friend and with Serena and with Sean and my birthday dinner, we just had this private dinner. It was the most fantastic place and just beautiful and all the good things. And it was one of the most fun I have had in quite some time.

Okay.

And it is a weird dynamic because when you drink with your kid, it feels different, right? Especially when your kid is 18 and in this country it's 21, but in St. Lucia it's 18. So it was different. And no one was getting ridiculous because you're with your kid. You're not, like, hanging out with your best friends from high school. But it's a transition in a relationship that is so weird but so great at the same time. It was a good time. I like it. Well, thank you so much, Hillary, for joining me on a place of.

Yes, I am so happy to have been here. Thanks for having.

I have enjoyed this conversation so much. Me too. Coming up next week, we are talking with Brian Strider, my husband and Jake's dad. We really go deep into Jake's story, his sickness before he was sick, how we maneuvered that, how it impacted our marriage, our relationship, all of the things. I mean, it was the first time we talked about some of those things in a decade, like, in a very long time. It was really special to be able to reminisce about the good things and the bad things and just know that we're on this journey together, really. It was really special for us. It was a great conversation, and I hope you'll tune in next Thursday. So I want to take a break for a minute from our regularly scheduled content and I want to talk about another show on the bright sided network. It is called Grab Life by the reins. It is the story of these two celebrity horse trainers. But let me tell you, it is not what you think it's going to be. It is these stories of adventure and misadventures, I should actually say. And if you are someone who's got that sense of humor, that might be a little raunchy.

It is hilarious. The episode I listened to was about skinny dipping, but it resulted in a marriage proposal. So I'll leave you with that. It was hilarious. These episodes are somewhere between like 15 and like 22 minutes long, so you can just kind of listen quickly. It can lighten your day. It is hilarious. Highly recommend. Close.