← A Place of Yes | A Grief Podcast 
A Place of Yes | A Grief Podcast
Self-Care Sounds Nice, But Who’s Watching My Kid?
00:34:34
Self Care As a Caregiver
Loading summary
Transcript72 lines
- [00:01]
Jessica Patei
In our culture, we just think if you're caring, well, yeah, of course you have to. That's just what you do. And it mostly falls upon women. We really need to value caregiving as a job and get paid for caregiving. It is all encompassing and it requires a lot. And it requires a lot of emotional, mental, financial resources.
- [00:24]
Heather
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. We are here today with Jessica Patei, founder and executive director of We Are Brave Together, a nonprofit dedicated to serving and supporting caregiving moms. Which I want to stop right there because that in and of itself is making me so excited to talk to you. I can't think of a more important role or job or needed community in our community, in our rare mom, medically fragile, medically challenged group. So I wanted to start by. Thank you for doing it.
- [01:07]
Jessica Patei
You're so welcome. It's my passion project. I have a son with a rare disease, and I know how desperately we need each other. And that community is really the only way through.
- [01:19]
Heather
It's awesome. It's awesome. You are also the host of Brave Together Parenting podcast, a contributor to the Becoming Brave Together book, which I have here, which I loved. Some of your contributors within the book have been guests on the show. So I wanted to start with hoping that you would share kind of the reason behind everything. You are Ryan's mom. He has Prader Willi syndrome, and if you could share with the audience a little bit about that.
- [01:47]
Jessica Patei
Sure. So I have three kids, Luke, who is 24, Ryan, who is 21, and Kate, who's 19. When Ryan was born, he could not suck. He couldn't move, he didn't cry. We spent a month in the hospital not knowing what was wrong. He had medical issues, and thankfully he was diagnosed at five weeks of age. So we got an early diagnosis, jumped into a couple of the organizations, national, and there's one in California that supports families like ours, thankfully. You know, I know that is not the case for everyone who has a child with a rare disease, but they were there to support us and educate us, and we, you know, went to our first support group when he was two months old, went to our first conference a few months later, and they've been a part of our lives ever since. Prader Willi syndrome is the early years are all about milestones because babies are born with low muscle tone hypotonia. And so you're focused on speech, you're focused on pt, you're focused on ot. So fine motor, gross motor and speech skills, communication skills in their early years, and eventually, you know, they catch up. It's different for everyone. And PWS is a spectrum. Ryan was very, very low tone, so he needed a feeding tube his first year of life.
- [03:04]
Heather
And for people who aren't sure, like low tone, like they kind of floppy, like sometimes floppy. You know what I mean? Yeah, floppy baby, right?
- [03:11]
Jessica Patei
So that means it's not just you have less muscle, but it's the muscle's ability to activate. And so they have to learn everything. They have to be taught everything. Ryan didn't walk till he was three. And that was even being on growth hormone. That was even with early intervention. He just was very low tone. And it took him a very long time. And then in childhood, there's this crazy symptom called hyperphagia that kicks in. So kids and adults do not have any satiety signals. They never feel full, they never feel satisfied when they eat. Because of that, it turns into this food seeking behavior because if you feel like you're hungry all the time, you haven't had enough food. And there's an underlying obsessiveness and anxiety that come with Prader Willi syndrome, just leads to this crazy food seeking behavior. And so we live with a locked kitchen. We didn't have to do it till Ryan was 13. I thought it was gonna hit her five or six or seven. But for him, I say it was a slow burn. His increased interest in food just kind of incrementally went up through the years. And then by the time he was 13, I was like, okay, we found seven wrappers of like seven protein bars under his bed. Okay, you're there.
- [04:23]
Heather
You're like, we're here.
- [04:24]
Jessica Patei
It's done.
- [04:24]
Heather
How did it show when he was younger? So did you just keep him on like a routine schedule of eating or always?
- [04:30]
Jessica Patei
Always.
- [04:30]
Heather
Cause, I mean, I know this is such a silly thing to say, right? But when, when you're really hungry, you're like, when am I gonna get my next meal? When am, when am I going to eat? Like, so if that's, that must be the constant if you, if you feel hungry all the time.
- [04:42]
Jessica Patei
Ryan doesn't say he's hungry, thankfully, all day long. But that's how it feels if you don't feel that satisfaction, right, of being full. Because we got an early diagnosis and we got all the education possible, we knew that Ryan always had to be on a food schedule. So he's Been on a food schedule since he was born. The early years, it was because he didn't cry for food. He did not demand food. He was a very mellow, sleepy baby. If he didn't ask for food, you know, he wouldn't get it right. If we didn't know what was going on, eventually we'd be like, he's not eating enough. He's not gaining weight. What's going on with our baby?
- [05:17]
Heather
No, but that's always. They cry. Do you feed them? Yeah.
- [05:19]
Jessica Patei
We knew in the first 24 hours, he's not waking up. He doesn't cry. He doesn't cry if he's wet. He doesn't cry if he's unhappy. He doesn't cry if he's hungry. It's called failure to thrive. Also, the inability to really suck or nurse. Ryan's been on a schedule since he was born. And then once we learned about having a food schedule and what that should look like, we have followed that for, you know, almost 22 years. And so it's breakfast snack, lunch snack, dinner, and he gets a sip of milk before bedtime. No bedtime snack, no nighttime snacks, no seconds. Because kids with this syndrome, kids and adults, tend to have low metabolism. So it's a double whammy. You want to eat all the time, and you get loose food than everybody else. So it's crazy. He's also affected, you know, psychologically, cognitively, academically, behaviorally. So there's medical stuff, and then there's all the others, too.
- [06:08]
Heather
So I was thinking, so he's your second, so you knew right away that something was different. Is that safe to say, or. No.
- [06:15]
Jessica Patei
I mean, the first day, I was just kind of in that glow of, oh, I'm having my second baby. He was having breathing issues when he came out, so they whisked him away. His testicles were undescended, which I knew, like, one is not abnormal. But to have both, I was like, huh. But what stood out to me about his birth is when he came out and I just had a vaginal birth, just like with Luke. He cried for just a few seconds. And I was like, huh. I wonder if he's just like, an easy, mellow newborn. And then the next day when my pediatrician came back, he's like, all right, we're gonna start running a bunch of tests. Did you have an amnio? No, I didn't have an amnio. I was only 33 when I had Ryan, so I didn't really feel the need. Off we went, and I was like, okay. Everyone is really concerned now.
- [07:00]
Heather
Okay. This is different.
- [07:01]
Jessica Patei
This is real.
- [07:02]
Heather
Maybe not the right word, but I do love that you were able to get that diagnosis quickly and then find a community quickly. I always. This is such a weird thing to say, but I've always been a little bit jealous of that. So my son Jake was. You know, he's my second, and he was born very healthy. Like, just easy, kind of almost like what you said. I was like, okay, like, just an easy kid.
- [07:23]
Jessica Patei
Yeah.
- [07:24]
Heather
But at eight months, he had a seizure out of nowhere. Very atypical seizure, I always say. You know, at that point, I knew nothing about this rare medical world. We ended up with this long hospital stay at Boston Children's, and this very. He lost all of his milestones, but we never got a diagnosis. And it's always been something that just. Even now, he's been gone almost 14 years. You know, he's been gone a long time, but it's still like. It just feels heavy, it feels hard. It feels like, you know, I'm like, what happened? Like, what did it? Could I have done something differently?
- [07:56]
Jessica Patei
I lived in the hospital with Ryan. This was before smartphones, so I didn't look anything up, but I also didn't want to. Then when we did get the diagnosis, it put us on a path. Okay, what's next? Okay, thankfully, there was a PWS expert and endocrinologist in LA at the time at ucla. Okay, great. We'll get started on growth hormones.
- [08:16]
Heather
You could have, like, your list. And, like, we're doing this and we're doing that.
- [08:19]
Jessica Patei
Things to do. We had a plan. The most comforting part, though, was that within a few days of diagnosis and calling the Prader Willie California foundation and the national organization, I got a phone call. I call it the Lisa phone call. And she called to tell me that she was gonna be my mentor and that I was. You know, I was able to call her at any time and ask her anything. And I just exhaled so much anxiety and fear. Cause I had somebody who was ahead of me in the journey. Her son was about five years older. I knew that we weren't gonna be alone, that there were other families in Southern California that we could meet with.
- [08:53]
Heather
You know, it's not the same, but I remember as you were talking about that in that call, I remember coming home. So we spent 117 days in the hospital and, you know, came home with this very different baby than we had left with. And I just remember being like, what do I do now? Like, what is going on? What's gonna happen. And we got affiliated, and it wasn't a great match always, but it was an organization like the Epilepsy foundation of Northeastern New York hooked up with us. And while we were sort of a way more extreme case than most of the families they worked with, there was something in that. And I just remember my husband and I kind of taking a deep breath and saying, like, okay, that's important. We need to. We need to lean into that a little bit.
- [09:39]
Jessica Patei
It is, it is. And it's the sense of belonging, Right? You know, we all. It's our birthright to have a sense of belonging as human beings. And when you're given a. A child or a crisis or a situation, that doesn't put you in the mainstream pool of humans. And we all want a place to belong that feels safe. That's comforting, that's uplifting, that's supportive, that's helpful. We all deserve that. We all know.
- [10:09]
Heather
And we all. And we're better with it. Right? Like, that's one of the things, too, that I think has taken me a longer time. And one of the things with the organization that we do, you know, with Jake's help from heaven and with this podcast, what I have benefited so much, first with the organization and now, now with this kind of together, is these communications, is these conversations, right? It's that we are not alone, that we have other people with shared experiences. I love in the introduction of your book where you talk about the loneliness of onlyness. If I'm saying that right, like. Cause I just. I highlighted it because I was like. That resonated so deeply. I think that is the piece that for so long and for so many people, unfortunately, is missing. And what you're doing is making a home for it. And I think these conversations that we have is just so important for people to take that sigh you talked about, sort of that exhale of just like, okay, there's a place for me.
- [11:05]
Jessica Patei
Which is why in we are brave together. And then we'll get to that. You know, we're all inclusive. And so every diagnosis under the sun, and even if your child has medical, behavioral, educational, psychological struggles and there's no diagnosis or box to check, you are welcome. And we have a chair waiting for you.
- [11:25]
Heather
I love it. So let's. It's a perfect time. Like, let's get into. To the group, into we are brave together. So you started that in 2017?
- [11:32]
Jessica Patei
Well, I mean, the why is because Ryan made me a caregiver, and I knew how stressful and different and altered and wonderful and beautiful and crazy. All of it is. It's just so different than just typical parenting. And I had started writing blogging back when blogging was a thing in 2012, and being really candid, really honest, and I would get all these beautiful messages. Thank you so much for saying what I'm afraid to say out loud. I feel so seen. I feel so validated. I feel this resonates with my journey or my experience. Thank you, thank you, thank you. And so that really made me feel like I had a voice. And I'm a natural gatherer and a connector. And I was always someone who did girls trips, you know, through marriage and, you know, babies and just crises and all of it, you know? And my best friend and I started doing these fluffy girlfriends retreats where we would invite friends and friends of friends, whoever wanted to come. Kind of an intimate gathering, like 12 to 20 people. And we met in different places, and we'd hire a speaker. And, you know, we didn't do it to make money. We made no money, and we spent a lot of money to do it, but it was just so much fun. And we believe in the power of gathering women together. And when you leave the competition and cattiness and comparison behind that, the intersection of our lives is a gift. And so one day in 2016, we were doing a retreat in Nashville. We looked at each other. We said, this is all well and good, but where could we really meet a need? And we're like, well, who needs a weekend off? But, you know, moms who have kids with high support needs. So the idea was birthed, and the name was birthed. And then I just started gathering interest. Who's interested in something like this? If I were to create a community, a support group, we'd have retreats. Who's interested? And just everyone kept saying, me, me, me, me, me. So we launched before even becoming a 501C3. I hadn't even started the paperwork, but it was just time. It was just time we needed to do it. We launched with a party in my backyard, and 60 moms showed up from the area.
- [13:33]
Heather
Oh, wow.
- [13:34]
Jessica Patei
I was like, oh, clearly this is a need. Clearly, we need to do something here. We followed up two months later with our first retreat and our first support group. And, you know, just the response was overwhelming. So the next year, we got our nonprofit status and started fundraising.
- [13:53]
Heather
I love so much about what you said, and it's honestly so similar to, like, our journey. When we started Jake's Help from Heaven, it didn't come out of experience. It came out of need. Like you said, it's not always the same disorders or diseases or syndromes, but there's a lot of. Lot of us out there. I love. I love everything you said. I love the idea of girls trips, like, all of the things that are very typical, right? Like, there's very few people who don't love, like going out with their girlfriends or catching up with their old friends or having that community and that bond, and then to apply it to not only a group that has those same needs, but doesn't always have the time. And you talk about it in your introduction. I think you call it like extreme caregiving or extreme parenting or something, right? Because it is. It's a different way. And it's not a different way by choice. It's a different way by necessity of being a mother. I don't know. Like, I'm a mom to Ethan, and of course, when he has the flu, I am his caregiver, but I'm not 100% his caregiver.
- [14:52]
Jessica Patei
It is different. And we feel invisible and we feel marginalized and we feel isolated. And that's why I wanted to give voice, you know, through the organization, through everything that we do, but also through the book. That's why we wanted to do our first book. We are going to do a second book about to get in the works. And we know, we want to shout the worth of caregiving and caregivers and share what extreme and extraordinary caregiving is all about. Because in our culture, we just think, if you're caring, well, yeah, of course, you have to. That's just what you do. And it mostly falls upon women. We really need to value caregiving as a job and get paid for caregiving. It is all encompassing, and it requires a lot. And it requires a lot of, you know, emotional, mental, financial resources. I hope that, you know, besides what we're trying to do to preserve and protect the mental health of caregiving moms, that we're really raising awareness about the care movement that does exist.
- [15:54]
Heather
But it is that toll of the stress and the toll of keeping. Because it's not, you know, yes, all moms keep their kids alive, but it is. It's very different when you are worrying about some of these things. And I remember those days with Jake, you know, he was not keeping food down. He was throwing up. Like, you know, is he going to aspirate? He. He can't readjust himself if, you know, I mean, just. It's a different kind of worry. And it's. It's you're literally keeping your child alive, and that carries with it such a stress. And sometimes I think, at least what I did and I found sometimes what other people did is like, you kind of bury that. Right? You're like, I don't have time to think about that. I don't have time. This community where there are other people who. When you say something like that, too, like the burden of keeping my child alive or the pressure of that, not everyone understands that.
- [16:45]
Jessica Patei
It is. It's comforting, it's transformative. I say girlfriends who get you are sacred and mandatory in this community or outside of this community. We have to have people who get us.
- [16:56]
Heather
So I know for myself there are countless moments where you feel alone. Do you have a story like in this, where you knew you wish you had someone else? Because I'm sure that this community comes from a very personal need.
- [17:10]
Jessica Patei
Yes, yes. And this is actually about one of my other children, because once I got connected with other parents, moms who had kids with Prader Willi syndrome, you know, we had a text thread. We still have a text thread going. I think there's six or seven of us, and I can reach out at any time with any question or anything that comes up. During the pandemic, it came to light that my daughter was suffering pretty badly with depression and anxiety. And as siblings, do they hide it? That is a topic for another podcast, and I'm absolutely happy to come back to talk about siblings. I'm extremely passionate about their experience. But, you know, in this country and in our culture, there's stigma around mental health struggles. And so who was I going to talk to about this? It was very scary, it was very severe, and it is its own version of heartbreak. And hell, when you have a child who's otherwise typical go through mental health stuff, it's just. It's just awful. And so I felt, you know, obviously I had my husband who was in it with me always, but I needed a mentor who had walked through this before. And eventually I did find somebody. You can't talk about it on social media. Like, most of the stories that I share about parenting are all related to Ryan. There's just not a lot of compassion and acceptance and empathy as much as in this realm as it is when you say, my child has epilepsy, my child has a rare disease, my child has cancer, my child has diabetes, my child has autism. It's a hard journey as a parent because there is so much comfort in sharing.
- [18:42]
Heather
You said a couple things there, and I can relate to so much of that. Right. It's that pit in your stomach where you're just. It's a different kind of worry, too. It's so personal in a different way than if you're talking about, like, Ryan's story or if I'm talking about Jake's story. It's so personal to the person going through it. But as the mom, you're going through it in a different way. And it's such a hard balance. There's two things I wanna. And I'm not sure which direction to go in. You opened it up so nicely, the sibling piece. And I do think the sibling piece is. You know, I think about it all the time with my son Ethan, who's 20 years old now. And, you know, he was five when Jake died. So his, you know, he's had a whole entire life. Like, all of his real formative teenage years have been without his brother. There's a hard pressure there, I think, and there's a different kind of stress or anxiety or all of those things that come with it. Do you see that with Luke and with Kate? Yes.
- [19:36]
Jessica Patei
I want to go back to Ethan because I think there's a way to maybe diffuse what you might feel, if you feel like that he is living with a pressure even though his sibling is gone, is just by being curious. Like, it would be easy for other people to assume that because your brother isn't here and you're not living with us, you know, in emergencies and crises and hospital visits and surgeries, that, you know, you're not carrying a boulder on your shoulders. You're not carrying the weight of living right now with a sibling who's medically fragile and you've lost a brother. How does that feel for you now? And I think that would be a beautiful conversation.
- [20:23]
Heather
It's such an important and great perspective and way to think about it. I just. We focused in those years after Jake died so much so on the foundation and keeping Jake's memory alive. And cheers to Jake and all of these things. And Ethan was young and kind of along for the ride, and he liked it. He was like, oh, we're gonna go see Jakey at the cemetery. And these are balloons. Like, we would have these little routines. And then in the teenage years, I think it just became, you know, their teenage years a. I mean, but. Yeah, exactly. But they became more difficult. And then when he went to college, I had this moment, right, of like, holy crap. Like, he has processed and dealt with so much. And I have been in my personal loss that I have not really had those conversations. He wasn't as open to them at 17, but all of a sudden, like, 19 and now he's 20. We're having some of those conversations and I have a little bit of guilt of, like, all that in between where we didn't.
- [21:28]
Jessica Patei
Yes. I mean, and there's so much time to repair and to discuss and go back and talk about it. I mean, I didn't have parents who ever were. Like, gosh, upon reflection, I can see that I did not have these conversations, or I didn't think about this, or I didn't think about that effect or impact. Like, can you imagine if our parents ever did that? But our adult kids, our young adult kids, we can have these conversations. We can go back and say, wow, like, I'll send podcast episodes on parenting. I still listen to parenting episode parenting podcasts. And I'll say, ah, where was this episode when I was raising you guys? I'm horrified at some of the things that I did or said or whatever. Like, it's never too late.
- [22:12]
Heather
It's such a different. It's a generational change in our generation. Right. That. And we do have the control and power to do that.
- [22:18]
Jessica Patei
Yeah. And I think you can say, like, you may not want to talk about any of this or all of this right now, but just know that there. I know there will come a time when you do, and I'm all in. And you can say anything.
- [22:30]
Heather
I will do that. I think that is a great suggestion. I think now I want to talk a little bit because this is kind of a nice connection, too. So. Jessica Troiano, who, through the foundation. So over a decade, we have worked with the family, providing equipment, providing support. And one of the things that happens at Jake's Help From Heaven, which is not in our mission statement, you know, we are an organization that provides, you know, technology, adaptive equipment, medical travel, reimbursement, like sort of tangible things. But a sort of sidebar that has come is a little bit like the community that you're talking about. For so many of our moms, mostly, they are always looking for someone that relates. I am someone that understands the road that they are on and the life that they're living and that, you know, that pit in your stomach about keeping your kid alive, like, all of those emotions. I know I was able to introduce the two of you together because you have members of we are Brave together in every state. Correct?
- [23:30]
Jessica Patei
Yes.
- [23:31]
Heather
But you are predominantly like, have groups in California.
- [23:36]
Jessica Patei
Our mission, like I said, is to preserve and protect the mental health of caregiving moms. And what we are doing is we are putting on support groups, virtual and in person across the United States. And we call them connection circles. We also put on low cost weekend retreats to give moms a weekend off, a time for mental health education, a time with other moms who get it and they're intimate, you know, 15, 16 moms. We have a wonderful speaker at every retreat and retreat coordinator. We also have our podcast and then our latest offering was the book that you mentioned. So back to connection circles. We have leaders all over the country. I think we're up to 30 plus, maybe 32. Some of our connection circles are topical. So recently we launched two virtual connection circles. One for moms who have kids 22 and up another one for moms who are going through divorce or who have been divorced. Jessica and I connected. Jessica T. And I connected about her starting a group in Albany. And what that looks like is offering a place to meet on a monthly or every other month basis. So if anyone's listening and they're interested, well, gosh, I would like to start a little community, a little care group where I live, a connection circle where I live. Then you can just reach out to us and we can walk you through the process and see if it's the right timing, the right fit.
- [24:57]
Heather
I love it and I love the name Connection Circle. I think that is just such a cozy, happy, like, you know, it doesn't give like a, you know, sometimes support group has a connotation to it or something. You know what I mean? Like, but connection circle I think just feels good. It feels great. And I'm so thrilled that, that Jessica is able to, you know, I felt strongly like when I connected you two. Cause I was like, I think this could be great for her. Part of what I love with the podcast and with social media nowadays and with all the things is that kind of like what we started saying in the beginning. The community, it just becomes much smaller and there's this overlap and there's this great synergy when all of us talk with each other and share our writing and share our thoughts and it's just great. One of the things that you talked about was like sort of true self care. I think a couple things. I think self care is such a hot topic right now, right? Like for everybody. And I think for good reason. What are some takeaways for listeners here that you think are easy self care ideas?
- [25:59]
Jessica Patei
Let me back up and just say before you even think about doing any kind of true self care practices and Then think about some of the obstacles to getting there. Just please remember that you're worthy of investing in your own mental health. And true self care is engaging in practices that light you up, that ground you, that keep you grateful, that bring you joy, bring you peace. So you know, there's a difference between self comfort and self care. Self comfort is like Netflix some dark chocolate, a glass of wine, you know, getting your nails done. It's great in the moment and it's a relief and a distraction in the moment, but it will not sustain you for the long haul of caregiving. Really finding what that is. It could be deep breaths, like I get up, I go sit on the couch in the morning, I put on some peaceful music and I just put on a timer for 10 minutes and I sit there and I breathe. Writing in a journal, reading something inspirational. Those are easy things to do. Sitting outside in the sunshine and you know, feeling the grass with your feet. We do actually have a list of like, I don't know, I think 100 bite sized self care suggestions on our website under our resources. So your welcome to take it.
- [27:11]
Heather
We'll have that in the show notes.
- [27:12]
Jessica Patei
Yeah, no, because you know when you say self care, somebody thinks, oh, I gotta join a gym, I gotta join a yoga studio, I gotta spend all this money. There's so many free things that you can do.
- [27:23]
Heather
I love that. And it reminded me honestly, you know, even today, so today I was in one of those. I had a handful of things that were just not going right, right. It was like things were not working the way I wish they would and whatnot. So I took, I was like, you know what, it's time to take a breather, right? I can either like sit here and get like more aggravated or I just, I went upstairs to our third floor. I have a peloton there. I hopped on like a 20 minute peloton, a Lionel Richie ride. I was like, I want this to be like I'm not, you know what I mean? Like I was like, I'm not necessarily in it for like the cardio right now. I'm in it for like clear my mind, focus. And it was a 20 minute, thank God I was home alone. Cause I sang along to all the Lionel Richie songs. It was easy. And I think that you are absolutely right. And not just doing it when we're in that moment like I was today, but making it a habit. And I love even just what you said, right? Like you get up in the morning, you put on the music, you set the timer, you've got 10 minutes. And that is just very important for us to respect our time and our worth enough to make time for that scheduling.
- [28:24]
Jessica Patei
It is important treat it like an appointment. Also that I think what trips us up is the word self in there. Everyone seems to think that if the word self is in there that it's selfish. It's not selfish to take care of your mental health and you're in it for the long haul. So how are you going to put deposits in your mental, emotional, physical bank?
- [28:48]
Heather
Effie Parks and I have had a few conversations and one of them, you know, she was like, it's just you don't need all the expensive things that people think self care is. It is make time every day to go for a walk for those of us who might be inclined to think, like you said, that self care is selfish or any of those things. In my mind, when I call it a non negotiable, it changes it for me. It's like, okay, no, this is what I'm doing and yes, I'm doing it for my well being and my mental health. But it feels like no, I have to do it. But in a good way.
- [29:16]
Jessica Patei
Yeah, exactly. Not in a way that puts pressure. The shoulds. This is nourishing me just like food and water. And I think also really getting breaks is important. Now I know that's a hot topic because everyone is in different circumstances and in different states. Where do you get respite hours covered by the state? Do you not, do you have a good agency? I mean there's a massive shortage of respite care workers and respite nurses, you know, all over the country. But I think also we have our own internal obstacles. Like we think we can never leave our child, that we do it best. Of course we do it best, but that doesn't mean we can't.
- [29:52]
Heather
I think that's so important because it's so true. And I used to do it, I was like, I can't, you know, I can't leave Jake. No one can do it. What like, you know, the what ifs could, could drive you nuts. It's such important stuff. Like we need the groups, we need the community. We need to believe that it's okay to do these things because it really, it's not just okay. It's necessary.
- [30:13]
Jessica Patei
It's necessary.
- [30:15]
Heather
So we end this show, a segment called Ask Heather Anything. Do you have anything for me?
- [30:21]
Jessica Patei
Well, I have two very different questions that come to mind. One is what is the best thing that you can do for a mother who has lost a child.
- [30:32]
Heather
This is. I have said this before, and it's so simple. Someone showed up in the couple weeks afterwards, sort of, because there's that period when everybody is showing up and bringing food and doing things. Once the funeral has happened, the burial has happened, all of those things. There's just this really, like. Like, Brian's gone back to work. Like, life is continuing. An acquaintance of mine, not even one of my, like, close girlfriends, showed up at my door with two Starbucks, and she was like, let's go for a walk. I didn't have the energy or even the wherewithal to say no. Right. So I literally put on my shoes, grabbed my jacket, grabbed the Starbucks, and we just walked. All these years later, I think of that, and that was just. I don't even know that we talked about Jake. I don't know that we just. We walked, and I had a coffee, and it was so simple. But it wasn't that, like, what can I do for you? What do you need? Cause I didn't know how to answer that. You know, we already had people dropping us off food and doing, like, we had the meal train. We had all of those things.
- [31:32]
Jessica Patei
Sure.
- [31:32]
Heather
But this was just. I opened the door, and there it was, and it was. I try to do it when I know other people are in that situation, because I know the impact that had.
- [31:42]
Jessica Patei
Mm. Just someone offering to be with you and walk beside you. Literally, or a figure.
- [31:48]
Heather
Literally. Yes. You know, just. And not making me come up with it, like, really literally. Just Right. You know what I mean? Like, not having me solve the issue.
- [31:57]
Jessica Patei
The other question I have is just about being a nonprofit leader, and you're obviously a fundraiser, so what keeps you. I always say I'm a shameless asker, going back to some of our amazing donors and asking for a little bit more for this, you know, specific thing, whether for a retreat, the next book, scholarships, or. Or even, like, do you know, is there anybody, you know, that I should be reaching out to that would care about our cause? Like, how do you keep yourself going as a fundraiser?
- [32:25]
Heather
That is an excellent question, and I will say we actually have just pivoted that a little bit post Pandemic. In the beginning years of Jake's Help from Heaven, we had an annual event, and it was like, our landmark event, and it was our number one fundraiser. I always wanted to stop doing our fundraising event while we were still selling out, making a ton of money, being successful. And the pandemic hit, which kind of happened as I was starting to think that it was time for us to pivot. So we have not had a fundraising event for a couple of years now. And what we do is we do an annual campaign around Jake's birthday, which is when the fundraising event. We had started the fundraising event, so we sort of would be like a birthday party for him. Like, that's kind of what we thought was the idea of it. So now we do. We do an annual birthday campaign. It's a hustle and it's work, and it's always, you know, it's exactly what fundraising is. You know, if you believe in the work, if you believe that we're making a difference, we are creating opportunities for those with disabilities to thrive, and if you believe in that, then this is how you help us.
- [33:26]
Jessica Patei
So great. Thank you for that. Yeah.
- [33:28]
Heather
I am so pleased to have received your book. To connected with you, to. I know that there are so many families I work with who will benefit from your website and your podcast and all of these things. So I'm just so grateful to have met you. So thank you. Thank you for doing the work you do and for being a part of this community and a leading force in this community.
- [33:49]
Jessica Patei
Oh, Heather, I'm so grateful for you, too. I just think, you know, it's remarkable to me that even though you've lost Jake, Here you are 14 years later doing this work and serving and loving and helping. Just. Thank you. I am very touched by that, and I think it's remarkable. I loved our conversation so much.
- [34:08]
Heather
No, this has been wonderful. I really appreciate it. Thank you for listening to A Place of Yes. Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend. It would make a world of difference if we could just reach more people and share the work that we do in the. The stories we want to tell. Thank you so much for watching.