All right, so we have worked with Lizzie forever. Ready? Push. You got this. You got this.

Yeah, big girl. Patty knew this was coming. I think all of our therapists knew. I think there was a number of professionals that knew this. But when I tell you that my husband and I just... We had no idea. We did not... It didn't seem in the realm of possibility. It was like the floor shifted underneath us.

It is so hard to learn those lessons with your own child.

That was Lizzie, Ceece's mom. Ceece has a rare genetic disorder. And one of the things I learned in this episode was that it doesn't matter how sick your kid is or what you are dealing with, a lot of the fears are the same. A lot of the worries are the same. A lot of the annoyances are the same. And also a lot of the joy is the same.

And I loved sharing moments with Lizzie.

It It was awesome. 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. So today we have Lizzie with us. Lizzie is a mom of Cécile, who we have worked with since 2019. We've worked for quite a while. Can you share with us a little bit about you and your family?

Cécile was diagnosed with It was a very rare syndrome, so rare that the world-class geneticist who gave it to us had not even heard of it yet, called Pitt-Hopkins syndrome, when she was about a year and a half.

When did you first realize that you needed to get a diagnosis or that something was wrong. Like with Jake, it was eight months. We knew something went wrong. What happened?

Yeah, it's an interesting story because we kept insisting that there wasn't anything wrong, and all these other people kept telling us otherwise. But there was a bunch of breadcrumbs. Looking back when Cee was quite young, her pediatrician had flagged that her eyes crossed, which is actually very common with babies. But hers stayed crossed past that window. That was the first sign and the first thing that we were seeking some medical care for. Then doctors kept identifying other small things. She She wasn't reaching milestones. She had a single palmer crease on her hand, which is quite uncommon and is, as I've come to learn, often, I think, linked with either genius or intellectual disability. Oh, really? Yeah. I think there's a disproportionate number of American presidents, for instance, that have, and certain levels that have this single...

Something I could say right now, but I'm not going to do it.

I didn't mean for her to go in that direction either. We're very high achieving some individuals who have this single palmer grease, and many who... For instance, it's very common with children with Down syndrome. Even then, I was like, Oh, I have a genius on my hands. I still kept viewing it through that lens. She wasn't gaining weight. She'd had a couple of different small concerns. My cousin, who's a pediatrician, is the one who'd actually encouraged us to seek early intervention. I was just terrible to these lovely professional women who showed up in my home and assessed her and told us that she needed speech therapy and physical therapy and special education. I just kept insisting that she did not. I knew that she had a vision concern because the across dies. I kept saying, once we fix the vision concern, everything else will be fine. She's not babbling because she can't see lips, and she's not sitting up because she can't see to be motivated.

It's so hard. For those who don't know, early intervention is an in-home service that different counties come and you qualify for. What is it? It's till age five or until school age, I believe. It breaks it.

There's different... I think it's till age three. Then from three to five, they do the services in a preschool program.

I remember this vividly with Jake. They come to your home, and in some ways, it's a blessing because you're not having to take your child out. But in other ways, it can feel like such an invasion at times because you've got these people coming in your home. I remember with Jake being so defensive, This is my baby. They're coming in and they're pointing out everything that's wrong. I love the way you said that, though, right? These are these lovely people who come in and do their job, but sometimes it's hard to be nice.

It's like, you want to take care of your kid. There's a real one in you with that. But my home has not felt private since she was born. I can't tell you, there's always people in our home, and I've embraced it, and there's wonderful things that come with that, too.

Then there's great friendships and relationships that come out of it. Yes.

Well, Heather, the first time that you'd been mentioned to me, Katie Hover, who's a mutual friend, had seen some of that. We were going through lots of appointments and tests with Ceece, and she was like, You should talk to my friend Heather. I rejected that advice because I didn't think that my world was going to overlap with your world because I was still believing in, We're just going to get over this thing. We're going to do the therapy and get over it. But the milestones were more and more of them were being missed instead of the opposite of catching up. We were driving all over state, and we were going to all sorts of specialists.

For those who don't know, Jake's Help From Heaven is the organization we're talking about. It's a nonprofit that my husband and I started after the death of our son. Jake passed when he was four years old, and we decided that we needed to create something where we could allow those with disabilities and medical complications to thrive.

It was actually one of our early intervention therapists, Patty, who has since become extraordinary close. One of these women that I was quite resentful of showing up in my home three times a week, and then now is in my phone and texts me holiday photos, even though she's not still working with Cécile. But she had encouraged me to see one particular physician, developmental specialist. Even then, I still thought that this developmental specialist was just going to give us ideas for equipment or therapy. I didn't know the scope of it. He's the one that first diagnosed Cessly with intellectual disability. Patty knew this was coming. I think all of our therapists knew. I think there was a number of professionals that knew this. But when I tell you that my husband and I, we had no idea. It didn't seem in the realm of possibility. It was like the floor shifted underneath us. In part because we I didn't know enough about people with intellectual disability. I'd had such minimal exposure. I had so little to go from.

It is so hard to learn those lessons with your own child.

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 one dollar. Ethan would come home and 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 one dollar. And that is exactly what he did. We walked in, we opened it. It was 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 Health 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. 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. It's just hard. It is hard.

Yeah, the version of me, I have all sorts of things that me now would have told me then, but what good would that have been? Because the only way out is through. You had to figure it out. But at the time, he told us that we may never know what specific intellectual disability it was. We went to a geneticist at Boston Children's, and she reiterated the same thing, did a number of tests. Specialists only know something about less than half of the genes. She said after test, after test, after test, revealed nothing. She was like, We've got this one test left. If it's a known condition, this test will reveal it. That's called whole exome sequencing. It's an extraordinarily expensive test. The insurance company denied over and over and over, and our geneticist never gave up. We eventually got the test, and there it was, Pitt-Hopkins syndrome. Geneticist had never heard of it. I had never heard of it, of course, and that's where it started.

Tell me, Katie told you about Jakes, and you said no. What made you fill out that first application in 2019?

Patty. Patty, who I'd mentioned, was the therapist, and I think has probably helped a number of families. Some of it was the denial phase was long behind me, and here I was instead them for something you don't even know what yet. It turned out we started with travel. We were going to Boston several times a year. We're down to about two trips a year, but we've been going to Boston Children's anyways for Cécile's eye care, and she was getting procedures that no one locally was doing. We were also going for her geneticist. Then it turns out this very, very rare syndrome, very few specialists in the world, and one of them was in Boston. Mass General, another hospital in Boston, was there for us. It's complicated, though, to get out of state and get hotels and take days off of work.

We have a board of directors. We work together. We accept applications in the beginning. In 2011, we only had 10 applications. Now we have upwards of 65 every quarter. I remember when we started getting Cee Cee's applications in in 2019, and I remember for us, it was the travel reimbursements. Some of our board members were like, We don't understand why we do this. For us, it was such a personal decision to have those particular applications because with Jake, at one point, we were going every month. That changed a little bit, but we It's that same thing. You want the best for your kid, and a lot of times the best. His doctors were all at Boston Children's, and they were at Mass General. It's not just the down and back. It's the making sure your kid is comfortable. It's the gas. It's the mileage, it's the meals when you're not home. It's having a hotel that everyone can be comfortable with. You have other kids. Sometimes you bring the kids, sometimes you don't, but it's just all of that. We wanted... It's the title of this podcast, but one of the things that we have always said around the board table, and one of the things that I've always said is we want to come from a place of yes.

We want to keep that application and those asks for our families. We want to keep them simple because we've been there. We know what it's like. We want to be able to... If you can do the things that we that we are required to have on file, if you can give that to us, we want to come from a place of yes. We're going to say yes. Part of Jake's help from heaven is we wanted to make sure that families could get the best care that they needed for their child for the individual, and that they could get it and not worry about it. If we could ease that burden by covering those costs, that to us was something special. As I was reviewing things, I was like, In the beginning, you were a lot more. Because sometimes, like in 2021, we did four travel reimbursements, and that means you went possibly more than four times.

But just being able to... She had a couple of surgeries that year. Yeah, different things. You talked a lot about the practical cost, right? Of it, just these appointments add up. This isn't like the copay when my other kids get an eye infection. It's a much more complicated process. All the practical help with travel is, I think, obvious. I think you explained that well. But the other piece of it is just the intangible of just that someone cares, right? Just knowing that there's this whole group of people and this whole community that acknowledges you are raising a child in a way that is very different from your neighbors, and that sometimes the emotional support of just knowing that there's these places like Jake's help there makes the same impact.

I I do feel like we're a community. I feel like our board, we sit around there, especially when we have relationships that we've had over years. It's like you're part of our Jake's family. We really want to help and to ease that burden. I don't always like to say ease that burden because it's not a burden, but it's life can be hard. If we can make it a little easier.

Right. The kids aren't a burden, but the bills are. That's fine to distinguish that.

When it comes to advocating for your loved one, you hear the word know a lot. Sometimes we have to no. You see, Jake's Help From Heaven has a board of 12 directors, each one with a unique and qualified background. Sometimes we have to say no. Sometimes those applications don't meet our mission. With each request, there's a discussion to be had, and it isn't always easy. Taking back, I remember with Jake, there were things people would say, Oh, you should do this or apply for this. I was like, No, we don't need that. Jake was healthy for the first eight months of his life, but then He had this seizure and he lost all his milestones. When the early intervention specialist would come into our house, I was like, Okay, so when's he going to sit up again? When is he going to crawl? They were lovely. The answer was, No, he's not going to regain those. It's not going It's not going to happen. But I couldn't hear it. Talk about denial, right? I was like, No, really? When? I remember one of his therapists once was like, Not only can I not give you an answer, but you have to stop asking the question.

I remember being like, Ow, and pissed about it. But she was correct. It was such a kindness, actually, that she gave me that information, because once I stopped looking for that answer to that question, I was able then to figure out what I needed to be asking and thinking about.

I relate to that. I want to acknowledge that the Venn diagram of your world and my world, we share some things in the middle, but I acknowledge that we have very different experiences. I think one of the things you mentioned there is with Cécile's therapists and her school and her specialist, she's incrementally gaining skills. She's doing things that she couldn't do years ago, and she's getting better. It is awesome. It's such a small population. We don't have a lot of information, but we don't expect that her lifespan is going to be impacted. I acknowledge that you had, in some ways, the reverse of that, that you had to watch your son who had skills lose them. But I do share that feeling of you were asking the wrong questions, and so was I. My questions kept being, how is she going to live a good life when she's not going to live the life that I had imagined? You're telling me she's not going to go to a typical school. She's not going to go to college. She's not going to become a parent. I saw only the answers that I wanted. To those questions.

It took me a long time to realize that those were just not the right questions to ask.

It's changing the narrative a little bit.

Yes. That the questions were instead of what's going to be the markers of her good life?

I suspect that you- Once that becomes your focus, it's so great, right? Because that became... Jake passed when he was four. We didn't expect it. But our job became to give him the very best life possible. And we feel good that we did give him a great life. It wasn't that life that we thought it was going to be with two boys, 15 months apart in that. But it was very special and equally good and all of those things. Let's pivot a little bit to not just the medical travel, but we have bought some equipment for Cee. Can you talk a little bit about that, the impact that's had? I had forgotten until we were talking earlier about the iPad during COVID, when we did a COVID emergency grant.

Cee's equipment has been really helpful. One One of Ceece's challenges is trunk control and that she's non-mobile. She is a wheelchair user, and the wheelchair is a bazillion pounds, and it's heavy, and it's lunking, and it's wonderful that we have it, and it's great for school. I never I don't ever want to hear the language confined to a wheelchair because she is not confined to a wheelchair. She's freed by her wheelchair. Her wheelchair brings her all sorts of wonderful places. But it also hurts my back because it's heavy. We'd seen some other families in our Pitt Hopkins community using a lightweight, almost like a stroller model. But they're expensive because they don't make these and sell them at Target because most six-year-old children don't need them. That was a really lovely, helpful experience to get that. We use it all the time. It's collapsible, it's lightweight, it's much easier for... I literally bring her more places just because it makes it simpler.

That's what we love, right? It's like quality of life. We say in our application, sometimes we say, medically necessary, which is pretty self-explanatory, but we also like to say, medically convenient. Because medically convenient means it's quality of life. It means that if you can just make it a little easier, like something to just get in and out of the car, something that will keep her safe, then that makes everyone's life better. It's not just Cee Cee's life, it's the whole family's life. My husband always talks about, and you raised it a little bit, he always uses the example of a bike. But you're buying your typical kid a bike. You can go to Walmart, you can go to Target, you can- You can go to the neighbor next door because they've got one in the garage.

You can go anywhere in that bike.

All of a sudden, you put special needs on any piece of equipment, and it just is so much more expensive, almost unattainable for many people. That's why we like to come in and help with that because we want all of our applicants to have the same experiences or as close to the same experiences, the same joy, the same joy of being in a safe seat and watching their sibling play soccer, or when it comes to It's sitting in a bike and going on a bike ride, even if it's being pushed by the parent, but it's that feeling of being on a family bike ride. Some of the stuff we do is not just about the medically necessary, but a lot of it we live in that quality of life space.

Then that iPad was lovely also. I have nothing good to say about COVID. My husband was an essential worker, so he was never home during this period. I I was home what I thought was going to be a nice maternity leave with my third son who was just born. He was a very easy little baby, which is funny because he's a complicated toddler. But I was happy. My son was six weeks old at the time. Both girls were in school, and then all of a sudden, everyone was home. My oldest was a kindergarten. Cessly was in a preschool program, and I had a newborn, and I was the only adult home, and I'm trying to conduct virtual kindergarten, and we had to recite the pledge of allegiance every day. I had to pretend to be the bus driver to pick my oldest daughter up, and then I had to pretend to be the library and to help her get the book out because she was so focused on maintaining the school schedule. Structure. Cessly has school at the same time, and she's getting therapy. I'll tell you, we didn't have an iPad. We don't even owned a computer.

I ended up getting a laptop from my work that didn't belong to me. I'm trying to conduct two virtual schools simultaneously while nursing a baby. We were just on the brink. We just all took turns crying all day until my husband came home from work, and that was it. But one of the challenges was Cee was supposed to be getting virtual therapy. I'm grateful that the schools didn't just drop therapy, that they were still attempting, but teaching a speech therapy and vision therapy and music therapy and physical therapy through a screen. It's really, really challenging. Then we read that... Was this in combination with...

We had applied through a grant. Stewards and the Dake family had put together something for nonprofits, recognizing how difficult it was for nonprofits to do their work and raise money during the time of COVID. We were starting to see... We had to cancel a board meeting, and we were, like everyone, trying to navigate, but also recognizing exactly what you said, that our families were being impacted even bigger than everybody was because there was, how do you do therapies during... How do you do this? We implemented an emergency grant program in hopes that we could somehow ease, again, I feel like I say it a lot, but ease the burden. How can we help this? It was becoming clear that there was going to be massive regressions among a lot of our applicants. Like I said, our Jake's family. We wanted to figure out how we could, in some way, ease that. We applied for a grant so that then we could distribute things. I think you were one of our first applicants.

Heather, the speed with which that iPad showed up, too. I think to Cécile, gets, for example, her AFOs, ankle foot orthotics through insurance. It's a seven-month process. She has to see six physicians to get measured, and there's paperwork. I think I e-mailed you saying, Hey, if you guys have iPads, we would really benefit from them. I have no way to do her therapy. It showed up the next day. It was better than the Amazon overnight delivery. I couldn't believe it. That was it. Then there she was.

It's the part of our place of yes. We know, again, from experience, Medicare, insurance, any of these things can just take such a ridiculous amount of time that it's a little bit... We pride ourselves on that. Once you've done And what we've asked you to do, and we approve you, let's just get it done. So that's nice to hear, though. It's good.

Hey, I just wanted to take a minute from this episode and talk to you about Sarah Ortoga 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 12 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 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.

I'm going to ask you this. It's funny. Over the summer, Ethan, Jake's brother, graduated from high school. Him and his friends were, A, they had community service hours they needed, but they also are of that age where they were interested in what we're doing. They've been coming to our fundraisers. They know about Jake's Help From Heaven. Ethan certainly has been a part of deliveries and building equipment and being a part of the process, but his friends were becoming a part of it this summer. Three teenage boys, three 18-year-olds, I sent them over to you with the stroller. Can you talk a little bit about that delivery?

Sure. You know that I'm a high school teacher at a boys' school.

Yes, and I actually said that to me and it made me feel better because I was like, I'm not sure what's going to happen when they show up.

I got a lot of experience hanging out with high school boys, so it was fine. It was great. It was a nice surprise to have them there, too. They were very polite and a little shy. Ethan was leading the show, but it was great. They chatted with Cee Cee a little bit and helped me set it up. They had so much fun I have a similar interests to my husband, actually, with sports and stuff. That's right. I remember. He's a runner, too. We talked about them. Then I've run into these guys since. I saw them at the bowling alley event.

I saw them at the restaurant they work at. They were so excited at Fun Day. Two of them came up to me and were like, We They saw Ceece.

They saw Ceece in the chair that they had delivered in the pink stroller. That's probably gratifying for them, too, to see their work having an impact rate. There's probably a lot of volunteerism. You don't get to see the end result, but there they were. There was Ceece bowling with her siblings.

That was awesome.

Ceece's reactions to the deliveries probably vary a little bit on her mood. She's to give us the side eye and ignore us if she's not quite in the mood and sometimes super giggly and deleted. The iPad is... She's a fan of music. She's a fan of lights. The iPads feel very interactive. She recognizes voices and faces. I remember her music playing from her special Ed teacher and her vision therapy, all of a sudden playing the familiar apps that they'd been using at school. It was a connection for her. It's recognition and an engagement.

I remember, I think it was, and I'm trying to remember if Brian was with me or not, but when we brought over the little Riftin chair, and I remember you sat her right down at the table and she had her I don't know, it was like a puzzle thing that she was playing with, and your son came right over and started playing. And for me, it was just this really sweet little moment where she was comfortable sitting in a place where she could have this moment with her brother. I don't know, I just remember that being sweet because, again, it's not always like, Oh, it's this therapeutic chair that is giving her the best everything. It's giving her a chance of being a kid and playing with her brother. And it was just this thing you had. It was just this cute moment. And sometimes I think those moments are what it's all about.

I didn't mention this before, but the chair is a symbolic thing. I have a couple of these objects in my home that I struggled with after Cécile's diagnosis, and this is years ago now, but I remember we'd had a backpack that had her name embradered on it that was a gift when she was little. Then it was hard to realize that she wouldn't actually even be able to wear a backpack comfortably or walk to school like her sister had. We had tap shoes that I was convinced, Okay, she's never going to wear her sister's hand me down tap shoes. But one of them was this little play table. At the time, it was two little girls, and we had a little table and two little wooden chairs. You have this vision of what you expect your siblings are going to sit together and color together or fight together, whatever it is. Something as simple as just a little wooden chair that Cessly can't sit in safely. It doesn't give her the support she needs. It's weird because I struggled with that chair. I struggled with the backpack, just seeing those objects there as reminders that what you've envisioned is different than what you're going to get.

Honestly, a lot of that is just some emotional interrogation to come to peace with it. But a lot of it is also just practical objects. All we needed was a chair designed to sustain her weight with a belt. All we needed was these great backpacks that brands are making now that fit on the wheelchairs. There are those supports out there, and it's great to just have them and embrace It's just a little different.

It looks a little different than you thought, but at the end of the day, it's still there. She's still sitting at the table.

Now it is, yeah.

We wanted to do a little bit something light and fun. We have this portion of the program called Ask Heather Anything. Oh, boy. Yeah. So ask me anything. It's loaded.

All right. Can we start with one that's maybe not light and fun and then launch into this? Sure. I would just love to hear a little more about Jake because I've gotten snippets over time.

I I always say, selfishly, one of the reasons we started Jake's Help From Heaven is it gives me an opportunity to talk about my son. So there's nothing... Right. Like as a mom, you want to talk about your kids. And for me, it's 100%. I love talking about him. I talk about Ethan all day, every day. It's nice to have the chance. So thank you for asking. Jake was born completely healthy, which is part of what's wild about this whole thing. He was born in Boston, and he was born in May. And then two months later, we moved here to Saratoga. We lived in Boston, and we had decided We knew we were going to move, but we were like, Oh, let's just have him at Beth Israel, where Ethan was born. Let's just stay in Boston, make sure everything is good. It's a good delivery. He's healthy baby, and then we'll move. That obviously is ironic. But he was just all he wanted to do was keep up with his big brother. He turned over early. He cruised early. I have pictures of them where Ethan would show him how to take all the stuffing out of a pillow, and then they would take all the stuffing out of the pillow and throw it all over the place.

Jake would just be sitting there laughing.

Charming, yeah. Yeah.

He would be covering him in the pillow stuff. I'd walk around the corner and be like, What are you guys doing? You talk about that, how you picture your life, right? I used to have this very vivid picture of once Jake could walk, I'd be walking on the beach with a boy on each side. It's still hard for me because it just never happened. But it's that moment. You just create these moments, right? Unfortunately, Jake was eight months old. He was never a decent sleeper. He had some decent nights, but not a great... It was a totally normal night, but then he kept waking up. And I went to feed him, and I noticed that his arm was twitching, and it was the weirdest thing. It was just this twitch. And I was like, Brian, this isn't right. This is weird. And his personality was still him. He was great. But I was like, We have to go to the emergency room. Long story short, it was a seizure. It ended up being a seizure that they couldn't stop. There was not a neurologist in Albany or Saratoga, anywhere at the time. We ended up going to Boston.

It's a long story of how we ended up there, but then we ended up 117 days in the hospital. Talk about those moments and talking about having this thing to come to terms with, right? Because it was like, What if I What if I let him sleep with us that night? What if I didn't feed him? All of those things of how does this happen? To be totally honest, I still struggle with it all these years later. Why me? Why him? Why did this It's not going to happen. But you pivot, right? You figure out, you come to terms with it in the timeline of which you need to come to terms with it. But he spent his first birthday at Boston Children's. We came home shortly after that, and we just created this new life for us. We thought it was going to be... We thought we were still going to have that life. Jake wasn't in our mind. As sick as he was, he wasn't going to pass. We were helping him. He was in therapies. No, was he going to walk or talk or do any of those things? No. But what's ironic is right before he did pass away, he was having some of the best time.

He was having great therapies, and he was laughing, and he was Side eye. You talked about Cee with the side eye. I mean, Jake was nonverbal and all of the things, but he let you know. If he was happy with you, you got to smile. And if he was not happy with you, you got to look. He was just this amazing little, I don't know, bundle of perseverance. We always said that he taught us so much. It was four years, but he made us better people for sure. He helped me become a much better version of myself. I think his brother is a compassionate human being. While he's an 18-year-old boy, I think he has this side of him that is 100% molded by Jake and just that. I don't know. He was a cute little boy. I used to dress him in this shirt that said believe the Hype. I would bring it. He had make him wear it to all his doctor's appointments because sometimes the doctors, the most brilliant ones, sometimes their bedside manner can be a little rough, right?

I feel you.

Yeah. I would just be like, You know what? I know he's got a lot of things going against him, but he's got a lot going for him. Believe the hype. Here's my boy. It was a Gap shirt. It's still on our headboard on Brian's side because he just keeps it on our headboard, like Jake's shirt. It's always our reminder. When he first passed, we wouldn't leave the house without it. We always brought it. But now we've gotten a little better at it, but it's still hanging on our headboard.

Did Jake ever have a diagnosis?

Interestingly enough, he did not. We were working with a geneticist out of Mass General. She was making it really her mission. She was really incredible. She was getting tests approved. When you were talking about the process with Ceeci about how expensive it is and all this, I was like, I remember that vividly. She was working very, very hard at trying to figure out whatever they were zeroing in on. There was a handful of people in the entire world who would have had it. Sometimes I think the hard piece is, how do you wrap your head around that? How do you wrap your head around the fact that it's just really bad luck? It's what it is. It's bad luck. It's, how did this happen? The odds are so random. But it happened. It happened. It I hate to sound cliché and be like, Things happen for a reason, but I know to this day, I was supposed to be Jake's mom. I had done things in my... I was a special Ed teacher, and I advocated for my kids, and then it just It just became super real when it had to advocate for my kid, but I had the skills to do it.

Running Jake's help from heaven. Yes, I would much rather just be Jake's mom. I'd rather still be not doing any of this and just be a normal mom at home with two kids and live in that life. But I do know that this work is what I was meant to be doing, and I'm grateful to Jake for that. I'm grateful that we can do that because I know that this is where I'm supposed to be.

Well, for my next fun and light question. That was heavy. We can do fun and light. We come from a place of yes. Is there a time you've had to say no? Someone has just asked for something or lied about it.

I can vividly remember. I don't know that it was our first no, but it was our first... Hard pass. Our first hard pass. It was for a kitchen renovation. I remember being like, I want a kitchen renovation. Should I apply? It was just we have helped with home modifications. We have helped with a lot of building ramps. Like I always say, we like to keep it gray. It's not like, yes, we do this, no, we don't do that. Make a case for it. We understand this, but this was fairly clearly just a kitchen renovation. I was like, no, that's a no. We also have had some just It doesn't quite match. You know what I mean? We have helped with service dogs. We have helped with training of service dogs, but we've gotten some applications then for a pure breed. There's...

When you I trust the people are coming from a good place. There's some reason they've... I still would love to believe that these aren't like scammers or swindlers. There's some reasoning in their mind that this is what they need.

What I will say is when we have to say no, I I still in my letter, try to give them this opportunity. This isn't something that we can do. However, blah, blah, blah, blah. We understand that the individual you're requesting for has this, maybe we can do... And we try to say there's travel. Sometimes they do come back because I think you're right. Most people are just putting out an ask out there. Because I think we don't entirely have this... People are used to, We cover this, we don't cover this. The fact that we don't provide that, I think sometimes it leaves people not even knowing where to zero in. Then we do offer a little bit of guidance.

What are some fun things that you've been really... An unusual request that you've been delighted to say yes to, some Particularly...

We got an application for this young man named Austin, and his mother wanted a wheelchair. He was wheelchair bound, always in his wheelchair with the ventilator attached, significant health issues. His mom was like, One time, he was able to be on a platform, a wheelchair swing that he could wheel on and do that. I want one in my yard. I was like, This is awesome. We wrapped our head around it. Our board process is interesting because we have this whole group of really caring, really thoughtful people, but they're all coming from different viewpoints. There's some that are really practical and business-minded. They're like, Okay, we understand this, but how are we going to implement this? Because this isn't just something that we're going to build in our living room and deliver, or this isn't, How do we do this? We ended up reaching out to a friend of ours who is a contractor. We approved it. We let the family know. We ordered it. All of a sudden, it was like, It was just, Wait, we're going to have to dig concrete. We're going to have to dig holes. It's a big thing. All of a sudden, then you see Austin, and we got to make sure it's safe.

We have to do this right. We found a team. It was Brian, Ethan, and I, and Serena was with us, and then this whole other family and their kids because they were doing... It was this massive community service, and Chris was the lead of it, and it was unbelievable. We thought it was going to take three, four hours. We We were there eight hours until it was dark. I pulled up my Jeep, and we were building it by the lights of my Jeep. And poor Austin is just sitting there with the smile on his face because he knows what's coming, and he's excited. Luckily, Crystal, the mom, was amazing. And I'm like, Sorry, we come and we never leave. Long story short, we had to come back the next day to finish a couple of things. So poor Austin still couldn't go in it, even though he'd been waiting. We come back the next day. I'm like, No worries. We'll be there half hour. I obviously don't know what I'm talking about. Brian is like, Stop talking. We were there like another three hours. Finally, everything is safe. Everything is great. We get Austin in there and there's this picture, and I swear, I feel like it was yesterday, where Austin is just looking at me as happy as can be.

His mom is crying. I'm crying. It's pitch blackout, but he is swinging in his wheelchair swing, and it's unbelievable.

That's really gratifying.

The sad part of that story is about six weeks later, Austin passed away. Heartbreaking, but it was just... You never know the moment, right? You never know the joy. And that is why the place of YES is so important because we gave Austin and we gave Crystal and the whole family, we gave them joy. Do we wish we gave it a year ago? Yes. Crystal was always like, I wish I applied before. But he loved that swing. And it was just- She did it and you said yes. And she did it and we figured it out. And he had those moments. That was a few years ago, but it's definitely one that stands out because it was just so complicated. It was like what we were saying. Yes, it wasn't just like I ordered it like the other things, and then it shows like the iPad and it shows up the next day at your door. Or today, I picked up a wheelchair at Northeast Mobility and then drove and delivered it. Those are straightforward and easy. This was multiple levels.

That's a good yes.

It was such a good yes. It was so good. Thank you for listening. For more information on this week's episode or for resources mentioned, head to jakeshealthfromheaven. Org. If you'd like to connect with me or have any ideas for an episode, please email me at a placeofyespodcast@gmail. Com.

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 Side of Network. It is called Grab Life by the Rains. 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 15 and 22 minutes long, so you can just listen quickly. It can lighten your day. It is hilarious. Highly recommend.