Pivotal People
Join us in conversations with inspiring people doing amazing things. Their insights and experiences help motivate all of us to find our purpose that fits with our abilities, gifts and life situation. Get a "behind the scenes" look at successful people making a difference in the world and benefit from their advice for the rest of us. Our guests include authors, artists, leaders, coaches, pastors, business people and speakers.
Pivotal People
Embracing the Courage of Caregiving Mothers with Jessica Patay
Have you ever witnessed the sheer resilience of a mother caring for a child with disabilities? Jessica Patay, the founder of We Are Brave Together and author of the new book, "Becoming Brave Together" joins us for a second episode. Jessica's life is a testament to the power of community and the strength found in supporting each other. Her new book is a compilation of personal stories written by mothers who are the primary caregivers for their children who have some sort of mental or physical disability. Their stories are beautiful, inspiring, and eye-opening as we understand the hearts of mothers who perform extraordinary acts of caregiving every day, often without recognition.
We navigate the often overlooked necessity for mothers to refill their own cups, so they can continue to pour into the lives of their loved ones. Jessica opens up about practical strategies to maintain one's well-being amidst the storms of caregiving, and how the simple yet profound acts of a supportive community can lift the spirits of these devoted mothers. Her stories inspire us to extend our hands in support and to recognize the immeasurable value of the caregiving role in our society.
Get in touch with Jessica at We Are Brave Together
Order her book Becoming Brave Together
Order Stephanie's new book Imagine More: Do What You Love, Discover Your Potential
Learn more at StephanieNelson.com
Follow us on Instagram @stephanie_nelson_cm
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Well, welcome to Jessica Pate to the Pivotal People podcast. You might recognize her. She has been on before and she was gracious enough to agree to come back on because she's just come out with a great book which is a bestseller on Amazon right now. It's called Becoming Brave Together Heroic, extraordinary Caregiving Stories from Mothers Hidden in Plain Sight. Jessica started a wonderful organization called we Are Brave Together which supports mothers of children with disabilities, adult children, young children, to provide the much needed community.
Speaker 1:If you listen to our episode with Catherine Wolfe a couple of weeks ago, she talked about the feeling of isolation that families with disabilities have. Specifically, almost 20% of people in our country have some sort of disability but, as Jessica's book said, mothers who are hidden in plain sight because they're not necessarily out and about to the degree. Plain sight because they're not necessarily out and about to the degree. So Jessica has generously, I think, dedicated her life to helping support people in this position and helping raise awareness for the rest of us to learn how to be compassionate and supportive of 20% of our population.
Speaker 1:And I will let her speak, but I want to just read the intro paragraph about her book Meet the exhausted group of caregiving mothers who offer extraordinary care to a child with disabilities or unique needs. These unsung heroes who walk invisibly among us dedicate time, energy, love and their entire lives to help their loved one who is unable to help themselves, and their entire lives to help their loved one who is unable to help themselves. So, jessica, thank you for being here. I would love for you to share a little bit about yourself and your situation, kind of what started your journey down this path, thank you.
Speaker 2:Thank you for such a generous introduction, stephanie. I appreciate it and I'm so grateful to be back on your show. And what a wonderful opportunity to share all about this book, our first book from we Are Brave Together. A little about me I've been married to my husband for 27 years. We have three kids Luke, ryan and Kate. I say Ryan is the one who made me a caregiving mom.
Speaker 2:He was diagnosed with a rare genetic disorder at five weeks of age. It's called Prader-Willi syndrome and if you haven't heard of it it's okay, it's rare. Nobody has. Ryan is almost 21. And he's in the transition program with our school district. He has been affected medically, psychologically, behaviorally, academically, cognitively. So there's a lot going on.
Speaker 2:If PWS makes the news, it's because there's an insatiable food drive that kicks in in childhood and so the brain and the body in PWS does not tell kids and adults that they've had any food and so, left without supervision, they could literally eat themselves into a medical emergency or premature death. It is life threatening. It is a crazy symptom. We could not believe it when Ryan was diagnosed. When we read about that, all the other stuff, we could kind of wrap our heads around, but we just couldn't understand that this was part of a syndrome. So Ryan thankfully has a family that is very vigilant and diligent. We live with a locked kitchen, so our fridge is locked, our pantry is locked, there's nothing in the freezer but ice and we just are always, always checking he's on a careful diet and we always make sure that he is watched 24-7.
Speaker 1:That is quite a I'm not going to say burden, but I'm going to say quite a responsibility. And the beautiful thing about your book is that every chapter is a different story from a different mother with different circumstances, from a different mother with different circumstances. And as I read through it, each chapter, each writer kind of brought to light a different aspect of being a caregiving extreme caregiving parent is how you describe it. So, for example, one of the mothers talked about what not to say to an extreme caregiver. I actually wrote it down because it struck me and then I see that it's also a quote on your Amazon page, so it struck you too. Here it is. Too many people say to parents of disabled kiddos I don't know how you do it, Actually you do. You do the same thing. The choice is love every single time. And so many of the mothers who wrote in your book talked about the idea of, although they wouldn't wish this disability on their child, that it had changed who they were and that's something they wouldn't change.
Speaker 2:Right, right, and I would agree with that as well. I certainly wish that I could push a button and make Prader-Willi syndrome go away for Ryan and for our family, and I wouldn't change how it's changed me as a person. If there were no Ryan, I wouldn't have started. We Are Brave Together. I wouldn't be raising awareness about caregivers and caregiving, I wouldn't have this calling awareness about caregivers and caregiving, I wouldn't have this calling. I'm sure I'd have something else, but this has been the greatest joy of my life to serve my fellow moms and to support them and to help them feel seen, heard and validated and hopefully the book is also doing that for parent caregivers everywhere.
Speaker 1:And so if you could give a little more background on how you decided to start, we Are Brave Together.
Speaker 2:Sure, well, I always knew that I wanted to do something. I loved being a mom. I love being a mom. I have three kids. I don't think I mentioned Kate my youngest, who is 18. A mom, I have three kids. I don't think I mentioned Kate my youngest, who is 18.
Speaker 2:But I always knew I wanted to do something and I wanted to create something out of this crazy journey that we had been on. I just prayed and I had my heart and my hands open. You go from why me, why Ryan, to what now? What now? What am I going to do with this? What can I learn and what can I do with this? This cannot be in vain that we are dealing with this really crazy, rare genetic disorder.
Speaker 2:And so I see absolutely my background, my personality, my love of friendship, my love of community all being a part of starting. We Are Brave Together and I just knew from my own experience how much connection and community saved me, how much it meant to have mentors, whether they were formal mentors or organic mentors, just women I could go to, who are ahead of me in the journey. It meant so much and I had been doing these what I call fluffy girlfriends retreats with a best friend. We would hire a speaker, we'd pick a location in the country, we would invite friends and friends of friends and we would do these weekend retreats. And after about four years we said, well, this has been really fun and this is very expensive to do. We weren't making any money doing it, we were just doing it for fun. Where can we meet a need? Who actually needs a weekend off?
Speaker 2:But special needs moms, moms who are caring for children any age, with any type of disability, medical complexity, literally any challenge or diagnosis. They deserve a weekend off. So that's how we Are Brave Together was dreamed up in 2016. And we launched in 2017 with the intent to combat the isolation and the loneliness and the burnout that moms face by offering support groups, which we call connection circles. We have them all across the country. We offer low cost retreats, so we cover 75 to 100% of the cost of our retreats so that moms can have access to it, and we also offer scholarships for every single retreat, and we've added other things along the way. We have a podcast to offer inspirational, resourceful, practical content. We do caregiver packages, and then our latest offering is this book, which I am told is like attending one of our connection circles or retreats in person, because you hear all these stories and you feel so validated.
Speaker 1:And so I think everyone's first step is to get this book, because until I read the real specifics, like what a day in the life is for an extreme caregiving mother, next to her deep feelings of love, I mean sacrifice. Yes, being aware of extreme caregiving parents in my life or their disabled child. And how am I supposed to act? What can I do? And you had a story about one of the moms had a son with cerebral palsy and I'm just going to read this. His name is Sean and she said growing up with Sean taught me a lot about people. How they respond to him is how I judge them as a human being. More often than not, there is an uncomfortable beginning. They don't know how to talk to him, they speak too loudly, they dumb down what they say. None of that bothers me, because it takes time to educate someone who hasn't been around a disabled person before. But people who speak to me instead of to Sean like he doesn't exist are the ones who don't have a place in my world, not as a friend, not as a doctor, and this is something Catherine Wolfe talked about too. Catherine Wolfe is a international speaker, a best-selling author, and she can be in her wheelchair with her husband and people will speak loudly to her. And she said even speak, baby talk. So I said to my husband today, every time my husband gets educated because I read all these books and then I tell him everything about it. I said you know, we see people with cerebral palsy and we have to be reminded that inside that they may not be able to speak, they can't walk, and this isn't true for everyone. Everyone has a different degree of disability. But just imagine that they are behind one of your mother's talks about, behind a glass window, looking through the window at the world outside, and if you can turn and look, like you said, have someone be, be seen. What a difference that makes. I don't know what to say, I don't know how to act, but I do know how to treat someone like a human being and what a difference that might be. If you're in line somewhere, if you're in an airport or whatever, to acknowledge, to smile, to be kind, sit in the discomfort If you're uncomfortable, so what? Sit in the discomfort. There was an isolation.
Speaker 1:Another mom talked about how, prior to having her disabled child, she'd been in a social group of other parents and kids and over time, as the other kids got older, they became more independent. Her child became more dependent. They stopped getting invited to things and she said you know what? I probably can't go, but just keep inviting me, keep inviting me, keep inviting me, keep inviting me. She saw a baby shower on social media. She wasn't invited to and just sobbed herself to sleep. How easy is that, jessica? Just to say I'm going to keep inviting. And if there's a way that I could help provide caretaking so they could actually be somewhere, how wonderful is that.
Speaker 2:I mean that would be amazing, stephanie. Yeah, we want to be invited and we might have to say no more than we say yes, but we want to be included. We don't want to be forgotten and we feel forgotten. Our caretaking requires so much of our day so many appointments, so many therapies, meetings, fighting with insurance companies, fighting with pharmacies, fighting with state agencies to get what we need, and it keeps us at home. Not to mention if our child is medically fragile or psychologically fragile I mean with Ryan, because of his anxiety behaviors. It doesn't make me want to go out into public with him and to go places with him.
Speaker 2:He loves to get out, but I'm not the mom who is going to Disneyland with him and Knott's Berry Farm and the zoo and the aquarium, because it's not always easy. He can be triggered by something and we always, always, always have to think about food, which obviously. I'm 21 years into this. I know how to plan, I know how to meal plan, I know how to plan our day, I know how to pack meals and snacks, but it's always on his mind and so if we go out, then there's the hope that we're going to go out to eat, not have the picnic lunch. That's in the car, it's just, you know. So there are a lot of moms who it's too much work to get out If there isn't a changing table that is adult sized for a child, that's.
Speaker 2:I mean five or above. Those pull-downs don't work. We need adult-sized changing tables to be everywhere in this country. That is a whole nother topic. But I'll just stay home because I'm not going to lay my kid on the floor of a public bathroom, even if I bring a blanket or a beach towel. That's disgusting, that's gross, that is not giving my child dignity. We're going to stay home. So there's a lot of things that keep us at home and we're just looking out the window watching the world go by. It doesn't feel good, needless to say.
Speaker 1:Talk about your community, because it's really amazing how large your community has become. You said you started in 2016. So we're only eight years into it. Tell us it's. It's national, swimming from all around.
Speaker 2:It's it's international. We launched officially in 2017. We are now up to we're getting close to 2700 moms internationally. We represent all the United States with our membership in 25 countries, and we have connection circles in different cities and states, and we have more that we are launching this year, which is very exciting.
Speaker 1:One of the moms in the book talked about how your community was her lifeline, that the isolation is so painful and that, even if she's never even met the other mothers, just to have this online community has been her lifeline, and it's a nonprofit right.
Speaker 2:Yes.
Speaker 1:So people can donate? Yes, so people can donate. Wearebravetogethercom. One of the things you talked about was, in this whole extreme caregiving 24-7 in many cases the caregiver still needs self-care the caregiver, I mean. In your situation. What have you been able to manage for your own self-care and what do you recommend to other extreme caregivers extreme caregivers.
Speaker 2:Well, I want to start by saying I was a stay-at-home mom for 17 years, and so that alone takes a lot off my plate, and so I think I've never reached complete and utter burnout and despair, but I think it's because I've had some privileges. I wasn't a working mom until I launched. We Are Brave, I did a couple of years of working in sales, but you know okay. So still most of my motherhood I was a stay-at-home mom. And then also I have a supportive husband. I have a great husband. He's a hands-on husband. We give each other breaks so we can go exercise, and in the state of California we are awarded respite hours. I mean, you have to qualify to be a part of the state agency, et cetera, et cetera, but we've always used those respite hours, and right now there is a massive shortage of care workers, and so we're not using nearly all that we have been awarded. But we're also privileged enough to be able to hire people privately, and so I have a lot of privileges, I just want to say and so that enables me to take the breaks to invest in my own mental health and to engage in true self-care. Now, if I had none of that, and I talked to women who have none of that. I still say that you need to make yourself a priority. You need to know that you're worthy of investing in, because if you are the primary caregiver, you're the most important person in the house, because if you burn out then everyone goes down. So I feel like I'm always giving moms permission to take care of their mental health without feeling guilty, without feeling selfish.
Speaker 2:So the ways that I have practiced true self-care is definitely through prayer. That I have practiced true self-care is definitely through prayer, meditation, time with life-giving friends, yoga, exercise, running, walking, you know, date nights with Chris, date nights away with Chris, girls trips. So I have just always made it a priority. I've always asked for help from the beginning. I never played the martyr mom where I did everything because I was a stay-at-home mom or because I was the mom or because I was the primary caregiver. I always expected that Chris would jump in and he always was hands-on.
Speaker 2:So I think we definitely have a list on our website of bite-size self-care suggestions. It's a beautiful compilation that actually two of our contributing authors put that list together a couple of years ago. It's on our website, but I don't want self-care to feel like another to-do or an extravagance, or I have to go join a gym or I have to train for a race no, you don't extravagance. Or I have to go join a gym or I have to train for a race no, you don't. No, you don't. It can just be a few minutes every day. That is intentional, that's filled with something that helps you access joy or peace or keeps you grounded. And, yes, I can provide you lots of ideas, but if you don't believe that you are worthy of investing in it, doesn't really matter if I give you a lot of great ideas.
Speaker 1:Well, that's a good point and actually that goes for everyone. I said to Jessica there's so many things I wanted to read out of her book, although she probably should be the one reading it, not me. So we talked about the importance of including caregivers. But this is written by the woman who was sobbing when she saw the social media post and all she said was extending an invitation to a caregiver is a gift that is free and easy to give. An invitation can be a reminder that they are not forgotten. There is a place for them at the table. What a beautiful gift to give another human who spends most of their time giving to others.
Speaker 1:And even if you're not talking about an event, what about an email? What about a phone call? What about a text? What about just connection? You know I'm talking to my husband.
Speaker 1:I said I listed the people that we know who have disabled kids, and that's an easy one. That's the low hanging fruit. I don't have friends who are well, they would say, but not the extreme caregiving situation that you described in your book. But that's why we can support organizations like yours, because I do know that the retreats you talk about these are. I've read from some of these mothers who go on a retreat. It is their I've read from some of these mothers who go on a retreat it is their. Like I said, it's their lifeline, not just the respite but the hope that there are other women in the same situation, mm-hmm, and I think that's the beauty of the community that you've built. 2,700 people, thank you. I talked a little bit about you know. Hundred people, thank you. I talked a little bit about you know, sean, you know, and how, how we can acknowledge. What advice would you give people in terms of how to be more sensitive to parents and also their disabled kids?
Speaker 2:I think the first thing is just acknowledging the best thing that one of my best girlfriends said to me, probably 15 years ago now. She said Jess, I know enough to know. I have no idea what you're going through, but I do know that I love you, I care for you and I want to walk beside you. So maybe it doesn't have to go as deep as that. But you could say to your friend Lisa, I see that you have cared for me, your child and he or she is disabled. And I just want to acknowledge. I have no idea what that's like, but I see you and I care about you and I would like to walk through this with you and I would like to bring you a dinner on Monday, or I would like to pick up your groceries for you, or I'd like to go to the pharmacy for you. Or why don't you just drop bags of laundry on your front porch and I'll pick it up and I'll return it the next day? Or I'm going to bring you your favorite Starbucks tomorrow. Tell me what your favorite drink is.
Speaker 2:So just offering acknowledging is the first step. Just acknowledge that you see it, you know that you're going through something right and, honestly, this goes for anyone going through a chronic hardship or crisis. I know enough to know. I have no idea what that's like unless you've been through that crisis or that loss or what have you. So acknowledge and then make an offer. But make a tangible offer. Don't say let me know if I can help you. That's way too overwhelming for us. We need you to offer something specific. I'm going to come over and sit with you, I'm going to come with you to an appointment, I'm going to keep you company, I'm going to babysit for you, I'm going to do your laundry, I'm going to give you a DoorDash card, or I'm going to send a delivery to you. Let me know what your dietary restrictions are. So be very, very tangible about the offer.
Speaker 1:I like that and that's not hard to do. It's just hard to know. And what do you think? What resources are most critical for caregivers, like what do they really need? You just said one I never thought about, which is the adult changing tables.
Speaker 2:Yes.
Speaker 1:What do you think we're lacking?
Speaker 2:What do you think, or what resources do they really need, that just aren't there yet stations and airports than there are adult size changing tables.
Speaker 1:And.
Speaker 2:I love my dogs, but humans think count a little bit more. Anyways, you can message me if something about that lights you up and you want to get involved, because there are campaigns all over the country for adult size changing tables. We need higher pay for care workers. In this country. You can get paid more by working at McDonald's or In-N-Out than you can working as a care professional providing respite care to families. I mean certainly privately. You can pay a lot more and should be getting paid $25 to $35 an hour at least. But when you are relying on the state to provide respite hours for you and every state does not provide this so that's another thing we should have respite provided in every state. Respite hours should be given to those who qualify in every single state. In the state of California we have that, which is great. When you are awarded respite hours through the state, how the state compensates is not very much $16, $17, $18 an hour In California, that's really-.
Speaker 2:Yes, where I live in Los Angeles County, that's really low, it's terrible, it's terrible. So and I mean I could go on, the list goes on we need a lot more for adults with disabilities. There are so many amazing programs for kids, but once your child becomes an adult, it is not as easy to find day programs and jobs and just quality camps, quality opportunities for adults with disabilities, and so, yeah, I could go on and on, stephanie. There are so, so many needs and there are a lot of families that need financial assistance. So we need nonprofits that are dedicated to providing financial assistance to families in the disability world, because, you know, not everyone has great insurance. Not everyone's insurance covers all the medical supplies and pharmaceuticals that children need, or therapies.
Speaker 1:What are some of the nonprofits that you would recommend in that area?
Speaker 2:Well, there's two that I know of, and I know that there are more or three. I mean, there's one, the Black Fairy Godmother official Well, that's the blackfairygodmotherorg probably, and she's providing money for rent and money for bills. I donate monthly to this organization. There's an organization called MAMAN M-A-M-A-N. I'm saying it wrong, but it's MAMAN Persian and it provides necessities to families. There's one out here in California called Miracle Children's Network and that also helps provide, I think in a particular area or county. I don't know if it's statewide and I could certainly find out more, but there's definitely a need for help with just the bills.
Speaker 1:I have become more aware. So the awareness campaigns, I think, are working. I've become aware. I was so shocked by the 20%. 20% of people in our country are disabled in some way cognitively, physically, emotionally, mentally and we just aren't aware of it because they're not out and about and they're isolated, which, as Catherine Wolfe said, and then they're at the top of every list. You don't want to be on the top of. You know suicide rates, divorce rates, and if that was in front of any of us every day, if we saw it every day, we would respond.
Speaker 2:People would respond.
Speaker 1:People are compassionate, A certain percentage of people would respond. The hard part is that it's not in front of us every day. So I appreciate that you've written this book, Becoming Brave Together. It's on Amazon. It's a really quick read I'll tell you that because you can't really put it down and each chapter is very well written and each of the women who've written have some sort of advocacy role. I mean, most of them are professional writers. They have websites or programs that support extreme caregivers and they're opening people's eyes, and this book is opening people's eyes.
Speaker 1:So last time we spoke, you had your community, which supported extreme caregivers. What I appreciate is that you took the time to put a book together that all of us can read. Thank you.
Speaker 1:All of us can understand and, as I said to Jessica at the beginning of this, people who experience challenges tend to say you know, you can't compare pain. We all have different levels of pain. We're not trying to win in some sort of pain competition, but the reality is, I am a parent and when you read these stories, you simply acknowledge that, yes, there are people who have a much harder road and we're called on as Christians especially, to love and support people, and it's hard to do if we can't see them. And, Jessica, I just want to thank you for putting a light on this and helping ignorant people like me understand it better. And when it's not hard, at the very least we can each provide some financial support. So I'll provide these organizations on the show notes and everyone can remember wearebravetogethercom. And the book is Becoming Brave Together and I hope that everyone buys it. And I just so appreciate that you, on top of all you are doing as an extreme caregiver, that you are devoting your life to such a beautiful cause.
Speaker 2:Thank you so much. Thank you so much and I really treasure your response, stephanie. That is the response that we hope that people who are friends and family and acquaintances and strangers pick up this book and they are moved and they are changed and they're now, you know, they can't unsee what they've seen, as they've been exposed to extraordinary and extreme caregiving and exquisite love of these mothers. I really hope, we all hope, all 22 of us hope, and the team behind the book hopes that this will move people's hearts and move people into action. So I thank you so much for your beautiful response.
Speaker 1:Well, you're welcome Thanks for what you're doing and I just wish you luck on sales of the book and I look forward to seeing how it does. Thank you.
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