A Diagnosis Changes Everything: Suddenly Brave Together

We talk with Jessica Patay about the moment a diagnosis changes a family’s life and what “bravery” looks like when caregiving becomes a daily reality. We share how community support can protect caregiver mental health and why her book, "Suddenly Brave Together" aims to meet moms right at the defining moment.

• founding We Are Brave Together to reduce isolation for caregiving mothers
• defining bravery as showing up, facing grief and advocating
• naming altered motherhood and the hidden roles moms take on
• using a private online group, connection circles, retreats, podcast and books for support
• explaining the “suddenly” shift after diagnosis and the learning curve that follows
• describing Prader-Willi syndrome, food security and anxiety-driven behaviors
• navigating adulthood after school services end and the shortage of supports
• shifting from "why me?" to "what now?" through validation and community
• building confidence through doing, writing, networking and fundraising
• funding retreats and scholarships through donors, grants and sponsors

Find her website at WeAreBraveTogether.org

You can order this book and previous books directly from their website.
And if anyone out there listening has any ideas about how to get this book  into the hands of NICUs and pediatricians and geneticists, reach out to Jessica at WeAreBraveTogether.org

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Order Stephanie's book Imagine More: Do What You Love, Discover Your Potential 

Transcript

Welcome And Guest Introduction

SPEAKER_01 0:24

I would like to welcome Jessica Pate to the Pivotal People podcast. You might recognize her name because this is the third time she's been on. We've been around for, well, it's our fifth year. So she's been doing a lot of things in four or five years that we are going to be updated on today. Let me tell you about her. She is the founder of an organization called We Are Brave Together. She's also a mother, a wife, and advocate for caregiving mothers of children with disabilities, mental health challenges, and all unique needs. And she and her husband, Chris, live in Southern California. They have two sons and a daughter. And their second son, Ryan, was born with a rare, medically complex genetic disorder, which is called Protter Willie Syndrome. And about, it looks like nine years ago in 2017, Jessica launched the nonprofit we're going to talk about today called We Are Brave Together. And it's really focused on supporting caregiver moms in their journeys. She'll talk more about it, so I won't go into it, but it's a really wonderful organization that offers community and support no matter where you live in the country or the world, and no matter what your disability is, finding the common ground and building a community that really makes a difference in mom's lives. Wow. And today we're talking about her new book, which is called Suddenly Brave Together, Letters to Caregiving Moms at a Defining Moment in Their Lives. And it's an anthology of letters written by caregiving moms who are further along in the journey to help all caregiving moms, no matter where they are in their journey, feel supported and learn. So, and to be inspired and to be comforted and all of the things that community does for us. Jessica, I would like for you to tell us a little bit about yourself and how you started We Are Brave Together, and a little bit about your backstory.

SPEAKER_00 2:37

Thank you. I'm so glad to be here for my third time. What an honor, Stephanie. So I've just someone who has always been passionate about community. I love my girlfriends. I believe in the friendship of women when we leave, you know, competition and comparison and cattiness behind, that the intersection of our lives is a gift. And we're here to support and uplift and cheer each other on and validate each other and love each other and just really walk beside each other through all seasons of life. And I'm a natural gatherer and connector. And all of that fed into me really finding my purpose and calling, you know, coming out of a really hard story, which is my son's diagnosis, how it impacts him, how it impacts our family, how it impacts my motherhood. And so that is why I wanted to create We Are Brave Together, because I thought, well, if moms are so completely exhausted, overwhelmed, overstimulated, and overscheduled, they're not going to have time to create community. So I'll create a community and they can show up in person or online. And so we launched about nine years ago with the intent to preserve and protect the mental health of caregiving moms because caregiving on top of parenting is a lot. You're a nurse to your child on top of parenting. You're a therapist to your kid on top of parenting. You are an OTPT or speech therapist on top of parenting your child. You become a social services, you know, expert and treatment team leader. There's just so much. Parenting is hard, anyways, right? It's beautiful, it's hard, it's challenging. And then when you add caregiving to that, it's just a whole different experience. I call it altered motherhood. And so that is why I'm just crazy passionate about supporting moms. There are so many programs and websites and products and services for kids. But when do we really focus on moms? We just think you just do it because you have to, and that's what's expected in our culture or how you've been raised or taught. You just do it. And we do. And it's a lot. And I think, you know, I'm here shouting the worth of caregiving and caregivers with what we do. I'm raising awareness about extreme caregiving. And I just don't want any mom to feel like they are alone because you can feel alone. You can feel the only. And that can leave you feeling, you know, really sad and really isolated. And so we are brave together is here to say, I see you. I got you. I'm here for you. Your feelings and experiences and worries are valid. And we're all here to walk beside you.

Everyday Bravery In Caregiving

SPEAKER_01 5:42

I love that. And you've done it really well because, and obviously, there's a great need for it because you've had thousands of women join this. What I find interesting is that you use the word brave in your organization and the title of your book. It's really central to what you're going to call your brand, your book. So, what does bravery look like for a caregiving mother on an ordinary day?

SPEAKER_00 6:06

I think just showing up to do your best and not numbing out, not, you know, going completely on autopilot. I think being brave to confront our own emotional experience about the journey, our own anxiety, our own worries, our own grief, and really dealing with that rather than just becoming bitter and resentful. I think it's advocating at a doctor's office, it's advocating at a school, advocating at a social services agency. It's not running away. And there are different ways we could run away. You could really run away in addictions to soothe the intense anxiety and PTSD that are a part of this journey. You know, so it can be in really small ways of just showing up every day or every week and filling the pillboxes and, you know, taking care of, you know, diligently and meticulously your to-do list for your child and for your family. Or it could be, you know, in bigger ways where advocacy, you know, becomes a big part of your life as a caregiving mom.

What Support Looks Like In Practice

SPEAKER_01 7:23

One of the things I noticed in your stories as women are sharing these stories as caregiving moms, is especially, you know, the women who are very far along the journey. So for example, I read one story, the woman's son, who has cerebral palsy, is now 38, or at the time of the writing, he was 38. And what I appreciated was her honesty and vulnerability. You know, 38 years in, she could say that early on there is so much grief because, you know, it's not an actual death, but you described it as the death of a dream, you know, this imagined future. But also giving yourself grace. In the beginning, there was a lot of guilt as a mother that whatever the birthing process happened in her case caused the disability. So then she's feeling guilty about did I go to the right doctor? She's feeling guilty about I wasn't a good mother in terms of giving birth. And it's not until years later that she even has the space, the mental and emotional space to process that. So kind of what I'm getting from your stories is more experienced moms saying it is okay to, you know, don't hold yourself up to this level of perfection. Can you describe what We Are Brave Together actually does for moms or families who are involved? And how do you do that? I mean, is it is it online? Is it workshop? You know, if someone is listening, I really want someone to be listening. I'm thinking right now of a couple of friends I have whose kids have disabilities. Maybe they're not plugged into something like this. Maybe it would really help. So, what does it exactly do for someone? What would they experience be?

The Moment Life Turns Suddenly

SPEAKER_00 9:05

I would say, first of all, you realize you're not alone, that there are hundreds and thousands of moms out there. And we know there's even more who are not involved in We Are Brave Together all over the world. To know that you're not alone is powerful. To know that you can go into our secret Facebook group, share your story, vent about your day, your week, your season, ask advice, ask for resources, ask for a referral. And the moms all, you know, pounce lovingly with their thoughts and their experiences. If someone's inviting advice, everyone's willing to share their experiences. Also, there's so much validation that you can receive, whether it's in a secret Facebook group, an in-person connection circle, an online connection circle at one of our weekend retreats. And certainly through our podcast, you're going to hear stories, you're going to hear experts, you're going to hear advice and an experience with our Ask Us Anything episodes where people call in with any questions. And my co-host, who is a coach and licensed psychotherapist, we dive into those questions. And our books, our books are really community in the pages of a book. You're going to feel seen, heard, understood, and validated just by reading our books. And we as an organization talk about it all the time. Okay, even if we're in every city of the world with our connection circles and our retreats, there are moms who can't leave their life. Their kids are too medically fragile, behaviorally fragile, psychologically fragile, and it's too scary to leave home, or they don't have any respite. They have no help, no family or friends giving them an actual break so that they can leave. How do we reach them? Books. Books go everywhere. This book still says, I see you, I got you, and I'm here for you within the book. Well, let's talk about your book.

SPEAKER_01 11:07

The title Suddenly Brave Together. Okay, talk about the suddenly part. How does it really capture the journey of the mothers in this book?

SPEAKER_00 11:16

Well, we all remember the moment before and after a diagnosis, before and after a phone call, before and after an email, before and after a doctor appointment or a geneticist appointment, where we get the news. And when you are delivered a diagnosis on your child, on your baby, on your teen, suddenly everything shifts. You know, for us, Ryan was five weeks of age, so we were lucky to get an early diagnosis. And it's a giant shift. It's like the entire world just completely shifted on its ax. What everything felt and looked like before looks and feels and sounds completely different afterward. Because now you're just in this alternate universe. And in the beginning, you don't know what that alternate universe is all about. But you quickly learn, you quickly study, you read, you learn medical terminology, you learn, you know, how to navigate social services and medical teams and what have you. It's a huge, huge learning curve. But there's a sudden shift. Family life is not going to be what you thought it was going to be. Marriage, parenting, motherhood. It's it it all shifts suddenly when you're given a diagnosis.

SPEAKER_01 12:31

Well, could we talk about your experience a little bit? Ryan is how old now? 21?

SPEAKER_00 12:36

He's 22, almost 23.

SPEAKER_01 12:38

Oh, he's almost 23. Okay. So you got his diagnosis at five weeks. Yes. So you talked about this suddenly. Tell us about his diagnosis, but I'm quite certain, but can you tell us about your own personal growth throughout these 22 years? You know, if a if a mom is listening, maybe she's early in the journey and doesn't have, you know, much hope right now, or feels like she doesn't have much hope.

Prader-Willi Syndrome Explained

SPEAKER_00 13:03

Maybe if you could talk about your experience. Sure. Well, one, I'll explain Prader Willie syndrome really quickly. Ryan was born with low muscle tone. He couldn't cry, he couldn't suck, he could hardly move. So we spent a month in the hospital not knowing why. And then a week after we got out of the hospital, we got the diagnosis. My husband actually Googled his symptoms and said, Will you test for PWS? And so, sure enough, that's what it was. It's a rare genetic disorder. It's medically complex. I don't actually consider myself a medical mom, even though this is a medical diagnosis, because what I deal with mostly is high, high anxiety behaviors and the food-seeking drive, which is a part of PWS. So back to explaining PWS, in the early years, you're very much focused on milestones because you have low muscle tone, which leads to delayed milestones. So you have occupational therapy, physical therapy, speech therapy. Ryan didn't walk till he was three, even with being on growth hormone. Growth hormone is indicated for PWS. He started that when he was two and a half months old. So the early years, that's the focus. And then in childhood, at some point, an insatiable food drive kicks in. And this is a crazy part of the syndrome. The brain and the body don't tell kids and adults with the syndrome that they've had any food. Ryan will not say, I'm hungry all day long. Some kids do, but it's it, you're never full, you're never satisfied. You never get that like that was yummy, and uh now I'm full and I can move on with my day. Food is like air to kids and adults with the syndrome. And so they think about it all day long. Now, PWS is a spectrum disorder. So how how the you know milestones are affected, how you know speech, articulation is affected, intellect, academics, behaviors, anxiety, and the food drive, it's all a spectrum. So, for example, you know, we have friends whose kids have gone to the neighbor's house looking for food. Ryan's never done that. Ryan's never stolen money to access the vending machines when he was at school, you know, in high school or transition programs. Other kids might do that. He doesn't tantrum asking for food. And I I can't take any credit. I mean, we've we've followed a food schedule. We've done all the what we call food security, we've done all the, you know, all that we've been taught to do. But you know, uh Ryan will never be able to self-regulate, no matter what type of structure we provided. Kids who are able to, you know, get a high school diploma and go to college, because of that food drive, they will never be independent. Never be independent because it's life-threatening. If we didn't lock our kitchen, if we left our kitchen unlocked and unsupervised, Ryan could eat himself into a medical emergency. And kids and adults do this every year and they pass away. It's crazy. It's it's crazy and it's scary. How many people have this syndrome?

SPEAKER_01 16:09

It's like you said, it's rare.

SPEAKER_00 16:11

I don't know what the current number is worldwide, but it's one in 12 to 15,000 will be diagnosed. And it's just a fluky thing that happens at conception. It's not something that's, you know, genetically inherited or passed down.

When Disability Parenting Meets Adulthood

SPEAKER_01 16:24

So now tell us where Ryan is now in his life.

From Why Me To What Now

SPEAKER_00 16:28

What's his So he has exited the school district. He stayed in the transition program after high school till he was 22. And now we're in a whole new season. He's currently in between programs. He did try one adult day program August through January, and it just didn't work out. He was mostly successful, but he really needs someone to be with him one-on-one there and somebody who's like a behavior therapist. And they didn't provide that. And we thought, well, let's try it. Let's try three to one versus one-to-one. And he was mostly successful. But at the end, with a big outburst, it demonstrated that it wasn't the right program, wasn't the right fit anymore. And they they did a great job and they were well meaning and they certainly understood behaviors and they were very gracious to us, even though I was absolutely mortified. But behaviors all communicate something. It's not because someone is just trying to be bad. Behavior is communication. And so what he was communicating is I don't feel safe. This is not the right place for me. So we have been in a kind of a holding pattern right now, and it's hard. Thank God I have resources to pay for caregivers because not all caregivers come through the state or state agencies that are covered. And I work, I'm running, We Are Brave Together. I don't want to quit just because Ryan doesn't have programming right now. So, you know, we're thankfully able to pay for caregivers so that I can continue working. We've had amazing caregivers for the last 12, 10, and eight years that have stayed with us and they love Ryan and they know Ryan and they know how to deal with the good, bad, and the ugly. And so we're trying to figure out what the next steps are. It's really hard when your child becomes an adult in the disability world. There's just not enough supports and services. And Ryan, because of PWS, he can't work in a situation where there's food. So he can't be in a cafe where it's all run by adults with disabilities. He can't work in a restaurant or a grocery store. He cannot be around food. So, Stephanie, you had asked me about my own personal journey. And I want to make sure I mention that because I do attribute being in community as part of my transformation. Because in the beginning, it's really easy to say, why me? Why Ryan? Why us? Why our family? Why do we have to deal with this? And you can get really bitter. You can get really resentful of your friends and family who have, you know, neurotypical, healthy, quote unquote normal children without any, you know, apparent challenges or medical challenges or intellectual disabilities or behaviors or what have you. And it's all understandable, right? I say it's okay to have a pity party, just don't have a slumber party. We don't want to get stuck. I've heard you say that. I love that. You don't want to get stuck. And what helps you get unstuck is realizing, oh, I'm not the only one. And you only figure that out by being in community. I say that being in community and being so validated for my feelings and my experiences and my grief really helped me shift from why me to what now. What can I do with this? What can pain teach me? What's something beautiful that I can do as a result of this really challenging experience? And that left me open to, you know, God giving me a dream to start.

Confidence And The Shameless Ask

SPEAKER_01 20:01

We are brave together. I'm listening to this thinking, wow. So out of your difficult situation, which is difficult enough if that's all you did, you've actually built something that how does that feel? 4,200 moms. And that's I mean, how does that I it gives me goosebumps? I heard today that you know people are always saying, you know, I need to find my purpose, I need to find my purpose. And the speaker was saying, don't just look for your purpose, just start doing things. And when your passion intersects with your abilities, you're gonna know it. And this is what it sounds like to me, your passion, which is you were already a person of community, and now you have this deeply personal experience. And now, wait a second, my passion is bringing women together with your abilities. What did you do before you were a mom? You must have had some great organizational role somewhere. Well, I mean being a mom is kind of an organizational role.

SPEAKER_00 21:05

Yes, right. You're the CEO of your household. I think really what helped me along was confidence only comes by doing, right? And so I remember in 2011. Well, let me even go back further. I started running in college. And when I say running, I mean slow jogging, but I know not competitively, but I started doing distance running in my 20s and 30s and did a lot of half marathons. I did one full marathon with my husband. We did many half marathons together. That gave me such confidence of oh, setting a goal and doing the daily grind, doing the daily discipline of adding those miles, putting in the time, putting in the training. That was a huge boost to me. Like, okay, if I can do that, what else can I do if I just set my mind to something? Then in 2012, a couple of things started happening. One is I started blogging and sharing very raw personal stories about parenting and especially parenting Ryan. It was called confetti and confessions, truth telling in motherhood. It's no longer there. And that made me feel like I have a voice because people were responding. I was getting a lot of messages and comments, and people were saying, Thank you for saying how I feel. I'm so Afraid to say this out loud. So I really felt like I had a platform and a voice, and there it was clearly resonating. And then my best friend and I started putting on these fluffy girlfriends weekends. And so we had experience in event planning, if you will. So all of that contributed to my skill building to start We Are Brave Together. And also back in 2013 and 14, I was working as a stylist for Cabbie, which is a beautiful clothing line. And so I experienced sales and shameless asking and presentations and networking. And all of that, you know, is very helpful to me as a fundraiser. And I am a shameless ask. So all of those factors together help me build skills, confidence, and fueled my passion.

How Donations Fund Retreats And Circles

SPEAKER_01 23:25

Well, I hope people are listening to that because sometimes it's like you said with the running. It could seem like something that isn't related at all. You might think I don't have skills, but if you really look at things that you have done in the past that could apply to different areas, you have more skills than you think. I love that. So let's talk about this. Let's talk about shameless ask. Okay. I will tell you right now, I am a financial supporter of this organization because I totally believe in what they do. And specifically, they do retreats. And that's just one thing. So that's, I think, what I support. You know, we help moms go on retreats that they might not otherwise be able to afford. And I generally don't talk about charitable giving except when I would like other people to know if I have vetted something, you can know that it is financially responsible. I used to be the coupon mom. I just don't throw money away. I don't throw money around. It's a really worthy cause. So, Jessica, could you tell us a little bit about your funding, how you use it, and what you need? Sure.

SPEAKER_00 24:33

Well, first of all, I want to just say thank you, Stephanie, because you've been incredibly generous through the years. And you are one of our sponsors for book number two for Suddenly Brave. Good. I didn't I forgot that. All right.

SPEAKER_01 24:46

Good.

SPEAKER_00 24:47

I'm a sponsor. I'm definitely reading it now. Well, and the reason this book is even possible is because I went back to our faithful donors and said, I have a vision for our next book. This is the audience I want to reach. We need this book written. We need a book that we can put in the hands of, you know, new or newer moms. And all of you said, absolutely we want to support this. So I just thank you so much. You know, how we fundraise, you know, it's certainly it's individuals, it's families, it's family foundations, it's grants, it's, you know, corporate sponsors, you know, all of it. We're utilizing all of it. And we really spend most of it on our programming. There's, of course, behind the scenes costs, but like in just full transparency, I don't take a full salary as the CEO. You know, I tell my board, okay, we have until I'm 60 to get my salary up so we can, you know, start to think about a successor. But I'm not doing this for the money. I mean, in fact, we donate so much back, to be honest, my husband and I. We are using it for subsidizing retreats. We do not want cost to get in the way of a mom being able to take a weekend off, come to a retreat, receive mental health education, downtime, fun time, make new friends, you know, connect with incredible other caregiving mothers who inspire them. So that's one thing we do is our retreats. And we offer now five scholarships per retreat. Again, thanks to our donors. We put on connection circles across the United States. All of our connection circle leaders are volunteers. We have 35 or 40 now. We can start those anywhere. And we have a team of mentors that support them on a monthly basis. So every leader has a mentor, has a group to meet with on a monthly basis because they're all caregiving moms themselves, serving and supporting. And so we provide ongoing training, ongoing support, and we provide free retreats, a leadership retreat to all of our leaders once or twice a year because it's our way of thanking them, showing our appreciation, provide again, ongoing training. We do a great feedback session so that we can refine everything that we're doing. Our podcast is, you know, something else that we invest in. We have an incredible editor, I have a co-producer now, so that I can focus on other sort of CEO tasks and roles. And it's an incredible way. We've been doing our podcast for 10 seasons. We just got picked up by UK Health Radio. And it's a way thank you. It's a way to reach more and more moms, give information, share really great stories by moms or dads or siblings, and to just share wisdom and experience. And it's free. Like all of this is free. We do everything for free. The only thing that costs is our retreat, and certainly if you purchase a book.

How To Find The Book

SPEAKER_01 27:54

Sounds like a deal to me. Good. So how do people find you? And how do we find We Are Brave Together?

SPEAKER_00 27:59

So you can find me through the website at WeArBravetogether.org. You can follow us on Instagram and our Facebook page. Again, We Are Brave Together. Podcast is called Brave Together Podcast. You can find us on Apple and Spotify and all the all the usual places. And our our current book you can find on our website. Our first book, Becoming Brave Together, you can find on Amazon. Eventually, eventually, this will be on Amazon, but right now we're selling through our publisher.

SPEAKER_01 28:30

That makes sense. Well, I love it. I appreciate you taking your time. I know you're busy, and I just think, and I think my sonility is showing that it was a just I have to say to the audience, it was a while ago that she asked for people to support the book. Okay. Oh, yes, a long time ago. Books take a long time to do. As I said to her before we started, I just got my copy yesterday. And so I've only read a couple of the stories, but the stories are so compelling. They're so compelling. And I, of course, I read your last book, and that has stayed with me because the last book, I don't have a child with an obvious physical disability. So it really helped me to understand what life looks like for a family of, you know, it could be all kinds of different disabilities. I always say this, Jessica. Anytime we can see an issue, and this is air quotes, through a mother's eyes, it no longer becomes an issue, is a person. And that's the beauty of what these books do it gives us an inside look at what life really looks like, and yet not one story was complaining. Every story was having come through to the other side of saying, I love my child fiercely, it is not easy, but I wouldn't trade him or her for the world. And yes, I could use some support and understanding and compassion, but it just reminded me of what a true mother's love is, what true unconditional love is. So when I see that and I think, wow, I've had a pretty easy road compared to those moms. They are not complaining, they are not, you know, disparaging their children they love so much. I think I'd like to support them. And if I can support them by let you know, someone who's early on in the journey who has an opportunity to go to a retreat to be in person with other women, how will that, you know, exponentially speed her process on feeling, you know, permission to feel however she's feeling, not having to be perfect and having people she can be honest with. I love how you talked about your secret Facebook group because I know other people with other situations who have really relied on a Facebook group like that to immediately go to, ask questions, and you have people from all around the world answering the question for you in a way that your own local doctor might not be able to because he hasn't seen it as much, he or she. So that's too much of me talking, but I guess you can see that I really believe not just in this organization, but I really believe in Jessica. And I think a lot of people do because so many people have joined her organization. She talked just a little bit about her podcast, listen to her podcast that's really good. It's called We Are Brave Together. You can find it everywhere. And then find her website and order the book, buy the book. Maybe there's someone you want to give the book to. It would be a wonderful gift for someone who's walking through this journey.

SPEAKER_00 31:45

Yes. And if anyone out there listening has any ideas about how to get this book really into the hands of NICUs and pediatricians and geneticists, that would be amazing. Amazing.

SPEAKER_01 31:57

Right. For people to get it right at that point. What a good idea. Okay. I bet someone who is listening just thought of a connection. That's good. Wonderful. Well, thank you so much. And I'm looking forward to having you on again with your next book.

SPEAKER_00 32:12

Thank you. Yes, yes. I think we'll continue doing this every two years. It's really, it is such a labor of love. It's just incredible. Thank you, Stephanie.

SPEAKER_01 32:22

You're welcome.