Take Heart

Becoming Brave Together with Jessica Patay

• Sara Clime • Season 5 • Episode 174

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Sara met with the author and founder of We Are Brave Together, Jessica Patay, to discuss the beautiful things that come from being in a community of women caregivers. Jessica's community provides mentoring, meaningful conversations, and an authenticity that very few outside the caregiving community can replicate. She launched the nonprofit to support mothers of children with disabilities or mental health challenges. In her book, "Becoming Brave Together," she shares real stories of caregiving mothers to encourage understanding caregivers and their families and friends. Listen in to hear the inspiration for her nonprofit and her heart for special needs caregiving women.


Key Moments:

[8:44] Vulnerability breeds connections among caregiving women

[19:40] We hide our real emotions because of inspirational expectations.
[21:29] The book gives insight for friends of caregivers, too.
[24:55] We don’t want to be a burden so we avoid hard conversations.
[26:23] You are not meant to do this journey alone.

Resources:
Home Page: https://www.wearebravetogether.org 

Book: Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight

Support: Connection Circles

Bite-Sized Self-Care Suggestions 

If you enjoyed the show:

Find Sara at www.saraclime.com or on Instagram @saraclime

Jessica Patay (00:00.27)

What did you identify? Why did you identify with this mom, with this story, with this statement? There's a lot of inspiration that can be pulled out of each and every story. I mean, it would be a great source of inspiration and validation. 


Sara Clime

Welcome to Take Heart, a podcast about creating space for connection, hope and joy as a mom to a child with disabilities. We want you to feel connected and encouraged as we navigate this messy, emotional, joyful life together.


Hi, I'm Sara Clime and you are listening to episode 174. I'm so excited to introduce today's guest, Jessica Patay. Welcome, Jessica. We are so excited to have you. 


Jessica Patay

Hi, Sara. I'm so glad to be here. Thank you. 


Sara Clime

Founder and executive director, Jessica Patay, that is P-A-T-A-Y, is a mother, wife, and advocate for caregiving mothers of children with disabilities, mental health challenges, and all unique needs.


She and her husband Chris reside in the Palos Verdes area of Southern California and have two sons and a daughter. Their second son Ryan was born with a rare medically complex genetic disorder called Prader-Willi syndrome. In 2017, Jessica launched a nonprofit organization called We Are Brave Together, focused on empowering, strengthening, and educating caregiving moms in their unique, diverse, and difficult journeys.


Since then, We Are Brave Together has gracefully provided resources, respite, mentoring, and inspiration for moms caring for children or adult children any age with any diagnosis, disability, or challenge, offering in-person and virtual support groups, workshops, retreats, and inspirational events for their growing troop of nearly 3,000 moms across all 50 states and 25 countries. Jessica is also a contributing author to the book, “Becoming Brave Together: Heroic and Extraordinary Caregiving Stories From Mothers Hidden in Plain Sight.” That book released May 1st of this year. 


Sara Clime

I would love for you just to tell us, just to get us started, tell us a little bit more about yourself and your parenting caregiving journey. 


Jessica Patay (02:21.974)

I have been married to my husband for 27 years. We have three grown-ish children.


Luke, who is 23, Ryan, who's 21, and Kate, who is 19. And yes, we're in that grown-ish phase where it's very different when they were little. But I do like this season I have to say. Ryan is the one that I declare made me a caregiver. And when he was born, he was born with low muscle tone. He didn't cry. He could not suck. He didn't wake up to eat, he hardly moved, and they were throwing around this word, hypotonia to us,  which meant low muscle tone. And we spent about a month in the hospital not knowing what was going on. And about a week after we got out with a feeding tube, he was diagnosed with Prader-Willi syndrome. And this was way before smartphones. So I was not looking up anything when I was in the hospital. I really wanted to protect my mind during this time because of course I was already worrying and wondering, but I knew that I couldn't start Googling when I was living in the hospital with Ryan. Thankfully we got an early diagnosis. We jumped into organizations that support families who have children or adult children with Prader-Willi syndrome, went to our first support group when Ryan was two months old and found our tribe of families who are also experiencing this very wacky, rare genetic disorder. And then it went on to have Kate, who is my daughter. And I always say, thank God we had Kate. So, we knew we were going to be busy anyways, and we had a desire for a third. So we went for it. And I do not regret it one bit. 


Sara Clime

That's amazing. My oldest is 23. He actually just turned 24. And my youngest is 20 going on 21. So I love it. 


You say grown ish because it is and parenting adults is not for the weak of heart. It's just it's a totally new thing, isn't it? 


Jessica Patay (04:38.702)

It's a totally new thing. I know. I just recently said to Luke and Kate in a text message, “So, living as adults in this house, please don't ever ask me what's for dinner ever again. Don't.” 


Sara Clime

You'll see it when you see it or you're going to cook it. 


Jessica Patay

Right. You can go to the grocery store and you can cook. You're very good in the kitchen. 


Sara Clime

My gosh. I love it. I love it. So, I love the fact that I, so I can say too, before my son was diagnosed before smartphones as well, I still, was at work when we received the diagnosis and the first thing I did was Google. And so I love the fact that you did not Google, that you protected that space. I think that's so important. And if I could go back and tell myself something different, I definitely would have myself do something different where that's concerned. 


So, you founded a nonprofit organization to help other moms. And I love the fact that you don't it's it's enough to just lean into being a caregiver. And I always say that if you can perfect that part of your life, and whenever I say perfect, I do not mean do anything perfectly. I just mean that you lean into it and accept it and just do whatever you can for your child and for yourself and your family. And if that's what you can do, that is more than enough. But then whenever people also take it and pay it forward and start things where they help other moms, I find it absolutely fascinating. And so I'd love for you to tell our listeners a little bit more about We Are Brave Together. 


Jessica Patay

Thank you. I would love to share about We Are Brave Together.


You know, when you make that switch from why me to what now, when you are delivered a diagnosis, when you're handed a crisis, when you're dealing with chronic hardship, it leaves you open to possibilities. It leaves you open to dreams. It leaves you open. And I was I was just kind of walking around with my hands open and waiting for an answer. I have to do something from this. This can't just be in vain that I'm living this crazy story.


I would like to make meaning out of this crisis. I would like to make meaning out of something that is so, so hard and mind boggling. And so I'm definitely girlfriend's girlfriend. I love the friendship of women. My girlfriends are my family. And I've always been about connection and community. 


(07:02.604)

So, it is very natural for me to then want to start a community of moms who have kids with any struggle, any unique diagnosis, any disability, any mental health challenge. I really wanted it to be all inclusive, not just to be moms who shared the same diagnosis as my son. And I knew that moms are exhausted and lonely. And I thought, okay, if I create community, they can just show up. They don't have to create it themselves. They can just show up if we create a safe grid space, non-judgmental, where every mother knows that she counts, no matter where she falls on the caregiving spectrum of light to heavy. It all matters. It all counts. Your child counts. Your child's diagnosis counts. There's no comparing. There's no hardship Olympics here. And so I really, I had this big dream of starting it. And then I had some really great people around me, including my husband who supported this idea. And so we launched in 2017 with the intent to combat the loneliness and compassion fatigue and isolation that caregiving moms face by offering support groups, low-cost retreats. And along the way, we added a podcast four years ago, Brave Together Podcast, and we've also added some other offerings. Our support groups are called Connection Circles. We have them all over the country.


And we train our leaders in a very intentional way to create a safe, sacred space where moms can share and where everybody knows that they're there as a sharer and an encourager, a validator and a supporter in being a part of that circle. 


Sara Clime

I absolutely love that. As our listeners know, we here at Take Heart, Amy Carrie, and I have vastly different stories. Our children have vastly different diagnoses. And we even have different caregiving duties, as you would say, but the common theme when we first met each other and it took less than 24 hours for us to realize it was the emotions behind it all that really connected us, that made us feel seen with each other. And in your, in your, introduction of your book, I highlight it and I circled it and underlined it just so you're aware, but it is,


(09:25.964)

You had said the phrase “vulnerability breeds connections.” And I think that is so important. And when you give people that safe space that they can come in and just in talk and just be a part of another community of women, it is it's so vital. And you said that your your Connection Circles that the leaders are trained as well. 


Jessica Patay

They are. We have a whole curriculum and a training guide that we give all of our Connection Circle leaders. And they also have mentors that reach out to them on a monthly basis to make sure that they feel supported, can troubleshoot any situation that comes up, provide ongoing training, and just check in with them on a regular basis. 


If anybody's interested in that, we'll have links in the show notes that where you can reach out to Jessica and her team and get some more information about that. Because I do think that that is so vital and it's such a vital role, especially when you know other people are going to be leading you well. It's very hard to be vulnerable. And if you're vulnerable in a space that you're just not even aware, even if you know that you want it to be a safe space, but knowing others have been trained to handle that, and to hold that space for you. It's very, it just seems to be vulnerability comes a little bit easier.


It's never easy, but it probably comes a little bit easier, I would assume. 


Great. And so, We Are Brave Together, you just released your first book this year in May titled, Becoming Brave Together, Heroic Extraordinary Caregiving Stories from Others Hidden in Plain Sight. So what inspired you to create this book? 


Jessica Patay

Well, I definitely have always loved words and I've always wanted to write my own book, but I thought how better to elevate my fellow caregiving moms, but to give them a voice and to give them an opportunity to share their story. And I wanted to raise awareness around extreme and extraordinary caregiving. 


(11:48.152)

As you saw in the opening story that I share in the introduction, caregivers tend to minimize and normalize what they're dealing with on a daily basis because we get used to it, right? But it is not normal. And we want the world to see that. We want to raise awareness about parent caregivers. And we want to shout the worth of caregivers and caregiving with our book and how better to do that than not just share one story, but to share 22 stories. And I know how powerful it is to be able to use your voice. And I've been lucky and I've been privileged and I've been using my voice for over 10 years. And I wanted to give that to my fellow moms who I love and cherish and respect and admire and I'm strengthened by. And so it was a labor of love and I am so, so happy to have given birth to this book. And I think our publishers, think my, you know book team leaders, and I think all the moms who were willing to share their story. 


Sara Clime

And I, it's beautiful because in your introduction, you had said over time, the term normal changes in our vocabulary. And I think sometimes, at least for me, I felt really lonely for a long time because even though people empathize with me, even though people were there for me, they wanted to help. They don't, and still to this day, unless you're another, and I think you call it extreme caregiver, even though unless you are one, unless you are a caregiver, a parent caregiver, you don't understand how you don't understand our version of normal. It's almost like speaking a different language. You cannot understand our definition of it. So whenever you wrote that, that it changes in our vocabulary, it just, it dawned on me that that probably has a lot to do with it. It's not so much they don't want to understand the normal, they just can't. 


Jessica Patay

They can't. Yeah, and we change a lot. 


Sara Clime

And I love how, and also for those that I don't want to give away too much, but in that story that you were talking about, it was your counselor that had said, this isn't normal, Jessica. And I feel probably so many listeners are like, amen, it's not normal. And to have somebody validate that or least shine the light on that is really important.


(14:05.57)

So when you're talking about the stories that so each story, each chapter is a different story. And I know what I took away from it. But I also want to talk about like what types of stories are in the book. What do you want the readers to take away from it? 


Jessica Patay

So, we've got a different diagnoses represented in the book and different ages of kids represented in the book. We definitely wanted a variety.


And what I want the readers to take away, if you're a caregiver, I want you to feel validated, seen, heard and understood because like our title says, mothers are hidden in plain sight. You know, you walk around with a smile on your face, you walk around with a cute outfit and nobody has any idea how much you're struggling as a caregiver.


And, also caregivers are afraid to share. They don't want to be the downer in the group. They smile, they appear strong, and of course they are strong because they've risen to the occasion. They've risen to the challenges that have been handed to them because of course they would. They love their child. What I also hope is that readers who are friends and family will then say, my gosh, I really didn't get it and now I feel like I understand more deeply after reading 22 stories. I only knew your story, but now I've read 22 stories and it's really enlarged my heart. You know what? I would like to bring you dinner on Monday nights or I'll go to the pharmacy for you. I'll do your Costco run for you. You know, but how about if I just go with you to some of your appointments? I know that you have so many appointments with your kid. How about if I just come along and I'll bring us to Starbucks and you know, I just hope that people will reach out for support because there are very simple ways besides offering, you know, respite care that can help a caregiver's relentless to-do list. 


Sara Clime

When you, when you said just somebody saying, I'll just go to an appointment with you, are you actually, I got little chills because it is, I, I think some people don't understand how they can help. And I think, reading all of these different stories not only validates you yourself, as the parent caregiver, but as it validates you to other people in your life as well. 


(16:24.264)

So, I would suggest highly, I know we have a lot of listeners that are grandparents or siblings or loved ones or ministry leaders. And I think I would definitely, I would highly recommend this book because like Jessica just said, it is something you might know one caregiver in your congregation or you might know one caregiver in your school or you know, that you might be the para to one or whatever, or a friend or a neighbor, and you're doing a beautiful job understanding, trying to understand them. But this will definitely give you insight as to the underlying theme of what it means to be a parent caregiver. And I also like the story here, because like I said, we do have some siblings. There is a sibling story in here of one who ended up having to take care of her brother, right? Cause their mom passed away. 


Jessica Patay

Correct.


Sara Clime

Okay. And so there it's really, like you said, it's so vast. It's even with the little ones, you know, the reading the stories of the little ones, I even though my youngest is now 20, I still, if nothing else, I was like, okay, I did. That's how I felt. This is, and it's kind of an ongoing thing. And I think it's another way that we can be support and a point of connection for other caregivers or other parents who are just starting on this journey too. 


So, I have a question. So in your situation or like in your group, you know, just reading about your board of directors and reading about you. And we know that there are so many other like us out there. And I don't think until you start to get out there, you don't really realize how it's how many of us are really out there. How did you pick? I mean, how did how did you come to choose like these stories? Was there a certain way or these people that you know? How did you narrow it down?


Jessica Patay

That's a great question. mean, we had a publishing team and we also had on our side, we had a few people and we just wanted to make sure that we had a diverse representation of ages of kids and diagnoses and writing styles and good writers, you know, so not everyone has to be an experienced writer to get in the book. 


(18:42.41)

Not everyone had to have a platform to get into the book. You know, we, we really just chose a variety of stories that we thought would really round out the book. We wanted a balance of the hope and the heart. 


Sara Clime

I love that. A balance of the hope and the heart. And that was not, I'm sure it was not easy to come up with it, but you sure did in the book. 


Jessica Patay

Thank you. So, what do you hope readers will take away? I know with each story in this book, any mom to a child with disabilities or medical or mental needs can relate. I felt that reading it. But like my own personal story, each story seemed to reflect how life changed the day of diagnosis and how stressful that can be. There are some very real and raw stories. And I think that it helps us with some of our messy and real emotions because so often we hear, “you're such an inspiration,” “I couldn't do what you do.” Then you're like,” I was crying in the closet for 45 minutes because I dropped his meds.” And that's a true story that just happened this week. So when you hear you're an inspiration or my gosh, how do you do everything that you do, you tend to pull, at least for me, I tend to pull in a little bit more. Well, if they see me as an inspiration, I can't be anything other than that. And so sometimes our real emotions become shamed emotions. And I think that it was, that's another really beautiful thing about this book was that some real, very real emotions were not, they were told with honesty and vulnerability with a lack of judgment and shame. And I think that that was great. 


Like I said, you said extreme caregivers and only extreme caregivers or parent caregivers can really understand when you step into that role of 24/7/365 caregiving. And I know that you said that you just wanted people to feel seen and understood. And I definitely felt that whenever that was going through that. 


Jessica Patay (20:58.806)

I'm so glad to hear that. I hope that this is like attending one of our Connection Circles or retreats in paper form. We hope that it is a hug and a look in the eyes, I see you and you are not alone in the form of a book. Because we know no matter how much our organization grows, no matter how many donations we get, we're not going to be able to do a retreat in every city in the world. Right. And even if we did, there are still moms who can't leave their life. So how else do we inspire and empower and encourage other parent caregivers?


Give them a book. 


Sara Clime

Right. And and I would I think that's a great point. And for anybody listening, if you know somebody to say, you know, I just happen to be listening to this podcast and they recommended this book. And even if you don't read it first, I can definitely say I don't ever give books to people if I don't read them, because I figure what if what if that's in the middle of it that I'm not aware of. But this is definitely one that you can lean into and not read yourself, but give it to another caregiver. So even if it's something that you think, “Well, I know that my neighbor seems to be struggling.” That's something that you can help though. It might open up a dialogue too. So I just can't, I can't stress that enough. And I know like we had a vision for our book. We knew we wanted to serve our readers and our listeners well. So we wrote a book in such a way that what we thought would work best for them in different situations. But with that said, how do you see this book, which is a tool, how do you see this tool being used by the reader? 


Jessica Patay

Well, I think certainly, if the reader is a caregiver, then I say, the book for your family and friends. Absolutely. It will help them understand more because I don't know if I said this already, but you know, if I'm the only person in my friends and family's life that has a child with a disability and I've shared my story, it's easy because I think our psyche wants to minimize pain. And so it's easy to kind of minimize how intense my life is. But now if all my friends and family read 22 stories, my goodness. Okay. This is a lot more intense. This is a lot more extreme. This is a lot more extraordinary than I really, really understood. I think among parent caregivers, it can be used as a book club. What did you identify? Why did you identify with this mom, with this story, with this statement?


(23:22.648)

There's a lot of inspiration that can be pulled out of each and every story. So I think it would be, I mean, it would be a great source of inspiration and validation if moms wanted to get together with other caregiving moms and have a book club. 


Sara Clime

Yeah, I know. I personally have somebody that just received a diagnosis. And we met through a different, a different way, but it might turn out like that for us right at the beginning. But I think this would be something that's great for a new mom or new parent caregiver, new mom caregiver to get because you're often at the beginning you're given here's how to handle this meltdown. Here's how to handle this  life situation. And this is how to keep them alive. This is medications and insurance and all of the logistics about being that caregiver. 


Jessica Patay

Right. 


Sara Clime

Very, I know with me, I had, like I said, I was surrounded by loved ones and friends and we were very blessed and I could not stress that enough, but I did not have one caregiver because I was the first one out of all of us to have a child with this type of situation. Yeah. Like, like you and, to have someone say even, I know we only met over, you know, over this, I just wanted to give you this book and my numbers in it and just to have that for somebody else. And then you said to give it to your family members.


I think we so often give this internal dialogue, we have this narrative that we don't want to be a burden. We don't always like at Christmas, it's Christmas and we don't want to, I always feel like, here comes The Clime Situation again, here are The Climes. Wah-wah. Like it just seems like it's always something. And I don't want to be that for other people, but I think that if they could read this book and I'm talking about they as being family members and friends, they could read this book. They could be like, this is something that is universal. And instead of feeling like a burden, that could be something that the family and friends then instigate with you. Like, I was reading this book, how, and like you said, kind of like a book club, but maybe just a conversation, just to feel seen. And that is the most important part of it. 


Jessica Patay

Yes. 


Sara Clime

At least for me, think just knowing that somebody sees me. 


Jessica Patay (25:49.144)

Yeah. And I think we're sometimes afraid to have the hard conversations about how we really are and what we really need. Maybe this will give encouragement and courage to moms to do that and family and friends to have some hard conversations with us. Yeah. 


Sara Clime

Yeah, absolutely. So, you know, we were, we were talking about the mom, that friend of mine that just kind of knew to this whole thing. What advice would you give to those moms or caregivers that are starting their journey as a parent to a child with disabilities? 


Jessica Patay

I will say that you don't have to do this journey alone. You are not meant to do this journey alone. It is not a one-person job. I would say that your worth is not dependent on how well your child is doing despite their diagnosis. Your worth is not dependent on how well you are coping or handling with this crisis or chronic hardship. I would say that it is an up and down journey and there is humor and laughter and joy that can be found along the way. And I would say, know right now you're asking why me, why my child, why is our family having to deal with this? Nobody around us is dealing with this. I would say that it's okay to feel that way, and eventually, I encourage you to say, “What now?” Doesn't mean you have to start a nonprofit like I did. Doesn't mean you have to start a podcast. You don’t have to write a book. But what now? How can I make meaning out of this? 


Sara Clime

And I love you said that earlier, too, is when it was when it changed from why me to what now. But there is something what now that goes beyond this. And when you can start to change that question, you can at least start to try to figure that out. And I think it's an ongoing journey. I think it's something that I always said that whenever I say, I used to say, “Why, why my son? Why, why us? Why me?” And then it changed the inflection of it. Then it changed to, “Okay, why, why us? Why me? What, what am I supposed to do with this?” And so like you said, what now? And I think it's so important to continue asking those questions and to keep yourself even at the forefront. 


Sara Clime (28:13.812)

I know that you, I read that you are very big into self care as well. And I don't want to put you on the spot, but do you have some things that you can share with us about that have helped you along the way? 


Jessica Patay

Yes. First of all was believing that I deserve to take care of myself and I don't mean getting my nails done, but if you believe that you are worthy of investing in


and engaging in practices that will sustain you for the long haul of caregiving, that's the first step. Because I could give you so many ideas, and we have a whole, I don't know, 100-and-something list, or I can't remember how many, bite-size self-care suggestions under Resources on our website. It's a great list compiled by, actually, two of the writers of the anthology wrote that up a couple years ago. 


Okay. I could give you lots of great ideas, but if you don't believe that you deserve time, whether that's five, 15 minutes a day, 30 minutes a day, 30 minutes a week to invest in your own mental health and all the ideas I have, we'll just go in the trash can. So first of all, you need to invest in yourself and invest in ways that I call true self care. You know, there's a difference between self care and self comfort. So, self-comfort would look like Netflix, Hulu, glass of wine, dark chocolate, getting your nails done. That's all fine and good, but it's comforting in the moment. It's an escape in the moment. And that's fine. We need those things too. But it will not sustain you for the long haul of caregiving. So the things that I do would be meditation, prayer, yoga, journaling, time with life-giving friends, taking breaks away from the house, going on walks in nature. You just, there's so many different things that we can do. And I don't want it to be just about like, another thing on my to-do list. But I think if you shift in your mindset first, then there will be a natural outflow into certain practices. And you'll figure out what grounds you, what gives you peace, what gives you joy, what lights you up. I'm giving you permission to do that. I'm giving you permission to do that and to think of yourself without feeling guilty or selfish. 


Jessica Patay (30:38.626)

Because the word self is in there, I think we tend to think it's so selfish, plus the whole martyr mom philosophy, if you've been indoctrinated or if that's been modeled for you by your own mother, and you have to fight against that. We're not here to give and give until we burn out because then somebody else will have to come in and take care of your family. 


Sara Clime

That's so good. That's so good. Thank you. Jessica, can you tell our listeners how we can reach you, how we can learn more about you and even those that are in the book to send me the authors in the book as well? 


Jessica Patay

Sure. If you go to our website, www.wearebravetogether.org, you'll see everything that we're about, everything that we are offering. There is a page on there about the book and a listing of all the beautiful authors who contributed to this.


anthology. We're on Instagram @WeAreBraveTogether. We're on a bunch of platforms with our podcast, which is called Brave Together with Jessica Patay. And you can reach out to me personally, just hello@wearebravetogether.org. And it will find its way to me and I'll respond. 


Sara Clime

Thank you, Jessica, for being here. It was such an honor to meet you and to have this discussion with you. And I think the work that you and that your team is doing is just so needed from all of us caregivers. I thank you. 


Jessica Patay 

Thank you, Sara. I'm so grateful for this time. Thank you. 


Sara Clime

Thank you so much for listening to this week's episode. Are you a mom, a caregiver to someone with disabilities, be that physical, mental, emotional, behavioral, or medical? Do you feel hidden in plain sight? Are you desperate to feel seen and understood, to feel connected to others? If so, pick up this book and sign up for We Are Brave Together on their website and just sign up for their email list. Reach out to any of the women who contributed or just like Jessica mentioned, email her as well, because like they stated so eloquently, time and time again in this book, we are brave together. 


So, don't forget, you can always leave us a comment as well or you can email us. You can find our email and comment on www.takeheartspecialmoms.com. 


Sara Clime (32:56.546)

And if you haven't had a chance to check out our book, we talk about navigating some messy and joy-filled emotions that come with being a full-time caregiver. And you can find it at your favorite online retailers. You can find links to those retailers at www.takeheartspecialmoms.com/books.