Parenting on the Precipice, with Jessica Patay

What happens when your child's life depends on you parenting perfectly? How do you reconcile what it's like to live on the precipice all the time, with wanting to be a present and joyful person for your children, your partner, and your friends?

On this episode, we sit down with Jessica Patay, author of the powerful new book "Becoming Brave Together." Jessica opens up about the constant vigilance required in caring for her son Ryan, who has Prader-Willi syndrome and shares why and how she formed a community for other moms with intense caregiving needs.

Jessica's new book is an anthology amplifying 21 other caregiving mothers' stories as well. By elevating these diverse voices, she provides an invaluable perspective into the unseen battles and exceptional bravery of parents raising children with disabilities and chronic illnesses. Whether this is your world or not, Jessica's wisdom and the community she's cultivated offers insights and understanding that can change the world we live in.

In this episode, you'll learn:

• How to find or form community
• What you deserve as your birthright
• Why self-care isn't a curse word
• How to stay connected with the people who matter to you
• And so much more...

Learn more about Jessica:
Website
Instagram
Facebook
The Book
Brave Together Podcas

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Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Music credit: Limitless by Bells

Transcript

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey and I hope you enjoy the conversation. 

Welcome back to the show. I am so glad you are here today for this huge, huge, huge day. Because this is the day my book is available in the world. Breathtaking: A memoir of Family, Dreams, and Broken Genes is available wherever you love to get your books.

And I so hope that when you're done listening to this episode, you go to bookshop.org or Amazon or walk into your favorite indie bookstore or Barnes and [00:01:00] Noble and buy a copy of my book. So thank you in advance for doing that. 

And now on to today's show, which is just in time for Mother's Day, we have an amazing conversation with Jessica Patay, who is amplifying the voices of the “unseen warriors,” mothers, caring for children with disabilities and complex medical needs.

Jessica's new book, Becoming Brave Together, Is a powerful chorus of 22 caregiving moms bravely sharing their raw and inspiring stories from the relentless vigilance of keeping a child safe to the isolating loneliness this life can bring. Jessica and all of the contributors shed light on an experience society often overlooks.

In our conversation, Jessica opens up about the life saving impact of community and why radical self care isn't a luxury for caregivers, but a necessity. With equal parts, wisdom, [00:02:00] vulnerability and spirit. Jessica makes an impassioned call for all of us to bear witness to the remarkable strength of mothers in the disability world.

Whether you're in this world yourself or want to get understanding about others who are, Jessica extends an invitation to walk side by side with these unseen heroes. She's the founder and executive director of We Are Brave Together, a nonprofit that supports caregiving moms with children of all types of disabilities and neurodiverse diagnoses.

She's also the host of the “We Are Brave Together” podcast. 

Without further ado, I bring you Jessica. 

Welcome, Jessica. I am thrilled to have you here today. 

Jessica Patay: Hi, Jessica. So good to be here. I remember when I first met you at Global Genes and I was so impressed by you and touched by your story. So thanks for having me.

Jessica Fein: Well, I remember that, too. And I remember actually sitting in the audience. You were on a panel on podcasts because, of course, you have your podcast. And I remember sitting there and being like, [00:03:00] I think maybe I want to do this. Like this seems really fun and cool. And here we are. Now I'm interviewing you. So it's kind of amazing how that turned out. 

Jessica Patay: I love that. What a full circle moment. 

Jessica Fein: All right, well, let's kick off by sharing a little bit about you and your family. 

Jessica Patay: I live in Los Angeles area and I have been married to my husband for 27 years. We have three kids. Ages 23, almost 21, and 18, two boys and a girl.

And I say Ryan, my second son, is the one who made me a caregiver. He was diagnosed with Prader-Willi syndrome, which is a rare genetic disorder. He was diagnosed at five weeks of age. So thankfully we got an early diagnosis and we could then know what to do next, even though it was very scary and life altering, certainly to be delivered a diagnosis.

Jessica Fein: And what are some of the ways that that diagnosis manifests? 

Jessica Patay: Well, today is different than in the early years. When he was a baby, we are very much focused on [00:04:00] milestones because he was born with low muscle tone. So all milestones delayed, he didn't walk till he was three. But in today's life, we live with a locked kitchen because in PWS in childhood, at some point an insatiable food drive kicks in.

It's just a really crazy feature of PWS. Ryan doesn't feel full. He never says, I'm hungry or I'm not full. Can I have more? But he is very attuned to the food schedule. We do follow a food schedule. We do live with a locked kitchen. We do have things in place that create what we call food security for Ryan.

And thankfully he's not a young adult that is tantruming all day trying to get food. Has he ever, you know, dug in the trash can? Yes. Has he ever stolen out of babysitter's purses or staff at school? No. No. Yes, I definitely live with a vigilance because of the food drive, and it could be so much worse. He has a lot of anxiety.

I say we all kind of walk on eggshells around here, and [00:05:00] behaviors are definitely a part of PWS. He's cognitively affected, academically affected, so he's in the transition program with our school district for one more year. 

Jessica Fein: And now here you are with this magnificent book, Becoming Brave Together, which not only shares your story, but shares so many stories of other moms in the space.

And it's interesting that you just mentioned living with a locked kitchen because I love the opening scene of the book. You're meeting with your therapist and you're speaking specifically about locking up your kitchen or your child could die. And your therapist looks at you and says, You understand this is not normal and you're like, well, excuse me, this is normal for us.

Tell us about that scene. 

Jessica Patay: That was a moment I will never forget. I am sharing, you know, again, the word vigilance, the vigilance with which I live on, on, on, always checking the kitchen in the middle of the night. If I go to the bathroom, I check the kitchen because I'm not the last one to go to bed. In the [00:06:00] morning when I get my coffee, I make sure everything was locked.

Ryan would Literally eat himself into a medical emergency or premature death. It happens with the syndrome with kids, teens, adults every year. And so I am always making sure that he has zero access to extra food. And I'm describing all of this and probably complaining that I just feel so tense at home and I'm not fun and I'm not silly and playful.

She just says to me, well, of course you're anxious. Of course you're anxious. If you don't do your mom job well, your kid could die. She was so blunt, but I really appreciated it. That did work with me to like, wait, oh, you're right. My kid could die if I don't do my mom job well. And, you know, through the course of the conversation, it just made me realize how much I normalize and minimize the way I live as a caregiver.

Jessica Fein: So how did it change things for you when she put it in those clear terms? [00:07:00] If you don't do your mom job perfectly. Your child could die. You said that that put it into perspective for you. But also I could see making me feel more anxious like, Oh my God, I got to be perfect all the time. How did it affect you?

Jessica Patay: It actually didn't make me feel more pressure. It just validated my anxiety. It validated the tension I feel when I walk in my house. Like I can be silly, Sally, whatever with my girlfriends or away from the house. But the moment I step into the house, I feel the tension. And she just validated my humanity and my experience.

So it didn't make me feel worse, thankfully, because, you know, that was pretty harsh. It's pretty blunt, but it just made me realize it's okay. It's okay that I'm tense. It's okay that I'm not the fun mom that I want to be because I'm living under a circumstance that is very serious. 

Jessica Fein: Very serious, and like [00:08:00] you said, it's extreme vigilance all the time.

You are living on the precipice. What impact does that have on somebody's life to be living that way? And as many of the people in your book are living, as I lived for many, many, many years, what effect does that have, 24 7, to be braced for impact, so to speak? 

Jessica Patay: Well, I think it can affect my family relationships.

Like I said, I wish I could be not that I am not at times and not that I don't laugh in my own home life, but you know, I think me being a very tense mom and wife has its repercussions, you know, within the family. But we talk about it. My kids are all grown now. So we have these conversations. We talk about it.

I'm doing repair. I'm talking about, gosh, I wish I would have understood this such and such, you know, years ago. I think I've been highly aware of the stress of being a caregiver. So I've always really tried to take care of myself. I've always exercised. I've always made sure I had [00:09:00] breaks and date nights with Chris and time with girlfriends, time away from the house.

So I think that has really, really helped me stay afloat in so many ways. 

Jessica Fein: But yet at the same time, one of the things that you write about is you say, self care is not a curse word. Why? Why do you even have to say that? Like, why do we think self care might be confused with a curse? 

Jessica Patay: Right. I think it's just been over discussed on social media and blogs and you just hear that word and you know, moms roll their eyes when you talk about, you know, please make sure you're engaging in self care.

And of course, I'm someone who preaches engaging in what I say true or real self care, things that truly invest in your mental health. I don't mean watching Netflix or having a glass of wine or some dark chocolate. That's all fine and good for the moment, but that's self comfort and it won't preserve your mental health.

But I think. Because moms, caregiving moms are exhausted. Their to- [00:10:00] do list is relentless and never ending. And so to encourage moms to engage in self care just feels like another chore, feels like a to do rather than I deserve to take care of my mental health. I am worthy of investing in. I'm actually the most important person in this house if I'm the primary caregiver and I get to do this.

So I just think it feels like another to do or they're interpreting it as like I have to go join a gym and I have to exercise an hour a day and I have to whatever it is, you know, but there's just there's minutes that you could invest in your mental health every day as truth self care, whether that's a few minutes of meditation.

Jessica Fein: And I love that because what you're saying is this isn't an indulgence. We're not talking about, Oh, I need to, you know, like you said, have some dark chocolate and watch Netflix, which by the way, let's be clear. I love dark chocolate and I love Netflix. So I would count that in. But what you're saying is this isn't an indulgence.

This is an investment and it's important not only for you, but for the whole [00:11:00] family. What are other things? So you mentioned meditation. You mentioned date nights. What else do you think when you're investing in yourself? What does that look like? 

Jessica Patay: Definitely time with life-giving friends. So whether that's within the disability rare disease community or you know, my best friends from high school we do a girl's trip pretty much every year or every year and a half and I laugh so much and I can say anything about my journey.

They ask me great questions They really care. They really listen even though they're not in my world, but they're very supportive and very very loving So Whether you have one or two or ten people in your life that are life giving, that help you laugh, that give you perspective, that truly support you, love you, accept you, that will sustain you.

And I think something new that I'm practicing that I would love to share, I'm doing this with two sets of friends, some childhood friends and high school friends. And what we are doing is every week we send a video update into the group chat so that we can [00:12:00] hear each other's voices and see each other's faces.

Because it's such a boost, honestly, to my own heart and soul to see them every week. And we're doing that for each other. And everyone gets so excited every week to see each other's videos. And I think that has a more powerful effect than a text message that says, I'm thinking about you. 

Jessica Fein: You know what? I love that.

And I think I'm going to try that with my group of friends. 

Jessica Patay: Well, and that's free, you know, so like that's available to everybody, you know, maybe joining a yoga studio. I do high yoga a few times a week. That's a privilege. It's a privilege that my husband can take over and be with Ryan until he goes to school so that I get to go to yoga.

Okay. Not everyone can do that. But, you can send a video message to your girlfriends and be in each other's lives in that way. 

Jessica Fein: Your book describes mothers as Unseen warriors and the invisible backbone of families dealing with disability. So I have a couple [00:13:00] questions about that. First of all, it was interesting to me that you say mothers are the unseen warriors and the invisible backbone rather than parents.

Why is that? 

Jessica Patay: Well, I mean, definitely my nonprofit is mother centric, mom centric. We are focused on supporting caregiving moms, but I would say the statistics are that moms are more often the primary caregiver than dads. And for any dads who are listening, that might be a primary caregiver. Thank you. Thank you.

Thank you. Thank you for stepping into a role. It's not easy and not everyone is in a equitable partnership where caregiving duties and roles and tasks are shared, but. I would say the majority of primary caregivers are moms. So that's why we chose to focus on moms. And maybe someday we'll do an anthology with dads.

That would be wonderful. We need their voice too. 

Jessica Fein: Yes. Yes. Well, when you do, you'll have to invite my husband to participate because I have to say, I believe my husband was a better hands on [00:14:00] caregiver than I was. And I'm not dissing myself or, you know, being insecure about my own capabilities. I just think there were things that came more naturally to me and things that came more naturally to him.

But it was fascinating because the nurses and the doctors were always taken aback and Always telling him how amazing he was and how just, you know, they couldn't believe it. It was really eye opening because when I was doing a good job, nobody was really saying that as much to me, but you know, everybody was surprised.

Everybody in the field who saw other families, they were surprised. And with very complex medical care, which my daughter had, being that she had a trach and she was then dependent, et cetera, it just kind of astonished me how surprised they were. 

Jessica Patay: Well, because you are the expected unpaid caregiver. That is our country.

That is our culture. We are expected to just be the caregiver, to be unpaid, save the country millions of dollars in what we do as unpaid caregivers. But [00:15:00] if dad steps in, he's amazing. I have a great husband, so I don't want to diss dads or hands on dads, involved dads at all. I am so grateful I wouldn't be here today if I didn't have the supportive husband that I do.

And yet It's not balanced. Nobody is saying, way to go mom at the hospital. They're like, wow, dad, you're amazing. And you're doing the same thing. Right. The same thing. 

Jessica Fein: Let's talk about this idea of unseen warriors, an invisible backbone. So obviously what we're hearing here is we're doing all of this behind the scenes. Is that what you mean by it?

Jessica Patay: Yes. And I think it also is a nod to the isolation that moms experience. You're not out in the community like you would be with a typical child. You're stuck at home. You're in hospitals. You are at appointments. You're at ABA therapy 40 hours a week. You're, you know, at the OTPT speech therapist, or you're at home with the therapists and professionals.

[00:16:00] And I know it's even in my situation where Ryan is not medically fragile. There are times because of his anxiety and behavior, I'm like, hmm. We're just going to stay home. We're just going to stay home. And there are many moms with kids who are aggressive and have extreme behaviors. They just stay home.

If your kid is medically fragile and leaving could possibly trigger a seizure or trigger some sort of health emergency, you stay at home. And so there's such an isolation. There's so much loneliness. Within the disability rare disease medically complex community and even I want to just talk about moms who have kids with mental health struggles You can't talk about that on social media.

You can't say hi, you know my daughter is struggling with depression and anxiety and I need a friend. It's your daughter's story. There's still a stigma you can't openly talk about it unless your child gives you permission and it's not easy to talk about because We still judge other mothers and parents if their kids struggle with mental health [00:17:00] issues You So, we're hidden and tucked away.

Jessica Fein: You wrote that the two saving graces for you have been sharing and being part of a community. So tell us about that because you went ahead and said, I'm going to make a change here and you started the community that has helped so many people. So tell us about that. 

Jessica Patay: Well, I started back when blogs were a thing, you know, back in the early, I don't know, 2010, 2012.

I just decided to start sharing my story openly. And I shared a lot of stories mainly about Ryan and about just life in the trenches of, you know, altered parenting. And I was so honest and people loved it. People messaged me and said, thank you for, for saying how I feel. Thank you for saying out loud how it is.

And I don't really know how to say it. And so it really, really gave me my voice. It validated my experience. It validated my emotions, cyclical grief, my exhaustion, my worry. And then we thankfully had jumped [00:18:00] into community within Ryan's diagnosis when he was a baby and finding friends who are going through the same thing was everything.

It was everything. It was comforting. It was transformative. I knew we weren't alone. I knew we had other people to go to who we could ask questions and vent, you know, share and just have people around us that really, really understood. And then as Ryan got older and got into the school district, then we also found families there, parents there that we could really, really relate to and navigate the journey together with.

And I say all the time every day. Connection and community saved me. 

Jessica Fein: I totally get what you're saying and yet I wonder how people can find that community and of course now it's easier than it was when you started because there's social media, but for so many people, either they still feel a stigma or perhaps their child is one of, I don't know, um, Like Dahlia was one of six in the world [00:19:00] with her dual diagnosis.

I personally found that community didn't have to be a matching diagnosis. Community had to be somebody else who was going through it. Somebody else who wasn't living the life we had expected. What do you think about that? 

Jessica Patay: Absolutely. Which is why when I launched We Are Brave Together, it wasn't going to be a community of moms who all shared a child with a diagnosis of Prader-Willi syndrome.

I wanted it to be everyone, every diagnosis, every struggle, every disability, and include mental health struggles, which we don't usually put under the term special needs or disability community. I wanted it to be all inclusive. And we even say that if your child has struggles but no diagnosis. You're still welcome to be a part of the community of We Are Brave Together.

I think we learn so much from each other's caregiving stories. And our philosophy too is that wherever you fall on the spectrum of caregiving from light to [00:20:00] intensely heavy and scary and fragile, it all matters. So we are not here to do the suffering Olympics. We're not here to say your child only has this.

My child has this. We really train our leaders to create a safe, sacred space where there's no judgment and there's no comparing. Every mother counts, every child counts, every diagnosis counts. 

Jessica Fein: You mentioned a moment ago, cyclical grief. Can you explain what that is? 

Jessica Patay: Yes, so when you're delivered a diagnosis, as you know, Jessica, you grieve the life that you thought you were going to have, you grieve what you thought your child was going to experience, and there's heavy, heavy grief in the beginning.

I say it's like walking through molasses. It's just thick, it's palpable, and then eventually over time you're walking through water. The grief buttons can get pushed again and again over the lifetime of your child. Over your own lifetime because something will happen. You'll see maybe other kids [00:21:00] achieving a certain milestone Maybe your other kids, maybe your nieces and nephews Maybe your best friends who you know, this kid is going to college and you know Ryan is not going to college.

Ryan is not in college. Ryan will not graduate from college. That can push those grief buttons again, and it's normal. I just want to normalize cyclical grief in altered parenthood. It's so okay, and it doesn't mean, oh, you're not over it. Well, we actually don't get over losses. We don't get over losses.

Hopefully, we're not in the throes of intense sadness, anger, bitterness, resentment, and if we are, then it's time to call for help. I always say it's okay to have a pity party, just don't have a slumber party and if you're stuck at the slumber party, then it's time to get a therapist or a coach or somebody to help you get unstuck because you deserve not to be stuck in that despair.

But grief is normal and it's part of the journey. It's part of the journey. I lost my mom 20 years ago. My grief buttons can still get [00:22:00] pushed. I still want her here. I want her to know Luke, Ryan, and Kate. So it is just a part of life. 

Jessica Fein: I couldn't agree more. I mean, when people talk about getting through it, getting over it, I'm like, no, no, no, no, no.

You are continuing your journey with it. And how are you going to be able to integrate it? But it's really interesting to me that you made that comparison to walking through molasses and then walking through water because it strikes me that even when you're walking through water, you're still holding your breath, right?

So it may not feel as burdensome, as heavy, as sticky, but you're still holding your breath because you don't know when the next thing is going to happen. You deal, as you mentioned a moment ago, with moms who are at all different levels of intensity in their caregiving duties, but also at different stages in their journey.

So what do you say when a new mom joins and she's just maybe found you and she is thick in the molasses? What kinds of advice do you have for her? 

Jessica Patay: Well, first of all, I [00:23:00] applaud that she reached out for community because I think it's really hard to do that when you're grieving. I think grieving can send you in any other direction.

I think the shock and the fear and the what ifs can send you in either direction. And some people hole up and then eventually they realize, I am so lonely. I cannot do this alone. And the reach for community. And if you're reaching early for community, then I applaud you because it is a tool in your toolkit.

It is a beautiful resource for your own beautiful survival and thriving amidst chronic hardship. I would say that right now it feels horrible and it might even feel so incredibly fatalistic, but you will not always feel that way. It will change. You will have new perspective. You will feel lighter at some point, and we're all here to help you through it.

We're all here to support you through it. I would also definitely say, [00:24:00] please take care of your mental health from the beginning. You do not have to do it all. Do not get into a family dynamic where you are doing everything and never ask for help. Ask for help from the beginning. Let's normalize asking for help.

No one, no parent is meant to do it alone, and then when you are in exponential parent, there's absolutely no way you can do it alone. So don't feel like you should. Don't put that pressure. Don't accept what culture has indoctrinated you to feel or think that you're not supposed to ask for help. 

Jessica Fein: It's interesting because you say, well, it won't always feel this way.

And I know that one of the things that you talk about is the lessons we learn from our children. And I think that's one of the reasons it changes because we're watching our children and learning from them. What lessons have you learned from Ryan that have affected your perspective? 

Jessica Patay: Mm. So much. He has such a big, beautiful heart, and I never thought that that would [00:25:00] be a part of him.

When I read all about the diagnosis 20 years ago, almost 21 years ago, I had no idea how intuitive and compassionate he would be. So I think just that crisis can teach you to expect change. The unexpected. I think we can also do that with our kids. Be open for what ways they're going to shine and everything that they will teach you.

I think Ryan has taught me to be more patient. He's taught me about my own anxiety. As I watch and witness and experience and deal with his anxiety, he's taught me to be more patient. Resilient when circumstances are tough and try you and make you question whether you should have ever been a mother. I could go on and on.

He's such a love and he's a ball of anxiety. It's hard. It's both. And maybe that's what he's taught me is that like you can be absolutely in love with your child. And the next day, you're like, you [00:26:00] are awful, I'm out of here. 

Jessica Fein: It's both and. Why did you decide to invite so many voices into this book? I mean, obviously, your story could fill a whole series.

And the book is really a chorus of people that you have invited into your community, who have found your community over the years, and you're sharing so many different stories and perspectives. Why did you decide to approach it that way? 

Jessica Patay: Well, I'll never forget when I started writing openly, you know, writing on a blog and I would get comments and I would get these email notifications for people who would make comments or how incredibly validating it made me feel one just as a human, as a mother, as Ryan's mom, but as a writer, because every writer thinks they're terrible.

Whether they've been published or not. And so to give the opportunity for 21 other moms to be validated in their journey [00:27:00] to get to have a voice and to be validated as writers, that's a no brainer. I'm all about elevating my fellow moms and what better way than to have this offering. 

Jessica Fein: Your book is aiming to be a bridge, right, to educate and open eyes and hearts.

What are some misconceptions that you're hoping to dispel with this book? 

Jessica Patay: Our culture doesn't necessarily treat diagnosis and disability in the way that it could. And because of that, when you are delivered a diagnosis, it can be so incredibly devastating. So for the moms who are earlier in their journey, who pick up this book, they're going to have hope.

They're going to see possibility and opportunity and strength.

Jessica Fein: And what about people who read the book who are not personally going through what the writers in the book are? What do you hope they take away? What do you hope they learn from it? 

Jessica Patay: When you have maybe one friend or family member that has a child with a disability, you're hearing one story.

But this is a book with [00:28:00] 22 stories. And I think it amplifies our experience. It amplifies our vigilance. It amplifies our exhaustion. It amplifies our needs. And I really, really hope that the friends and family and strangers that pick up this book will be moved to action. We'll say, you know what? I'll be your pharmacy runner.

I'm going to bring you groceries once a week. You know what? Drop your laundry on the porch once a week. I'll pick it up. I'll drop it back off in the porch. 

Jessica Fein: I want to find somebody who will do that for me. 

Jessica Patay: So I'm hoping that this will move people into loving, supportive actions because we're not always saying we want you to babysit friends and family.

But if you could take some daily to do tasks off our list, because we're at the doctor's office, we're at the therapist's office, we're at the hospital, we're at IEP meetings, we're at meetings with state agencies that helps so much. That helps so much. [00:29:00] 

Jessica Fein: I think that's so important, and I hope people are really taking that in as they're listening to this, because I know that people want to be helpful.

They just don't know how. Earlier in the conversation, you said that one of the most important things for you, in terms of investing in yourself and taking care of yourself, is your connection with your family. Old friends, your friends from high school who aren't in your world now, how have those people stayed really integral to your life and been supportive in a way that has felt meaningful to you?

Jessica Patay: Thank you. Thank you. I'm so invested in those relationships too. And so. I think when there's a mutual love and mutual investment, it grows and flows beautifully. And I did an episode on our podcast, I think in the first year, it was for my birthday. And so my group of high school friends, I call us the Yayas, like the Yaya sisterhood.

And I had them on. And what they [00:30:00] would say is, you let us ask all the hard questions. You let us just ask anything. And I shared it all with them. I was very honest about my experience. And They were good listeners and they didn't say the cliches, thankfully, that sometimes friends can say. They said, well, you were just so honest and open.

Jessica Fein: That's really interesting because that seems to be a theme for you. You were honest and open with your friends, which made them feel comfortable and made them want to be present and stick around. And you were honest and open in your blog, which makes me wonder, were you always honest and open, or was there something that made you say, okay, if I want to get back the support and the relationships, I need to put out some truth and honesty?

Or was it just like, I've always been an open book? 

Jessica Patay: Well, I think I grew up with family secrets. So that's another podcast for another day. I think I just felt so [00:31:00] differently about sharing our story. And I think, you know, it helped because there was social media and there were blogs. So I saw other people and I was like, Oh, this is a way to express this.

This is a way to be known. I think I've always wanted to be known, which is why girlfriends have always been a priority since I was a kid. I've always wanted to be known and then to be able to share on social media or share in a blog was another way to be known. 

Jessica Fein: How do your kids, now that they're older, how do they feel about you being so open and the way you share?

Are they ever like, Mom, can you, could you hold it in a little bit? 

Jessica Patay: I've had a little bit of that, not much. And I think it's because mostly I talk about Ryan. I don't really do a lot of shares about Luke and Kate. And if there is something I wanted to share, I would ask for their permission absolutely first.

And my husband is also my bar. He doesn't say, Oh, you got [00:32:00] to take that down. You can't say that. You can't share that. You know, he pays attention to what I share. And if he were to say, Oh, that made me really uncomfortable. I would take it down. I would honor that. 

Jessica Fein: How can people find your community? How can people find community in general?

Because I think a lot of people listening to this are, you know, maybe feeling a little bit more convinced that I don't have to go it alone. 

Jessica Patay: Well, you certainly can join We Are Brave Together by going to the website wearebravetogether.org to be a part of our community. And you can also reach out to me through going through the website or hello at wearebravetogether.org. 

If you're like, I'm over here in this little town in Rhode Island, and I don't know how to create community. I definitely have lots of ideas about how to create community, for sure. And I would love to impart that. And I I want to acknowledge too that there are real obstacles. Moms are exhausted, parents are exhausted, you're afraid that if you're with other people [00:33:00] within the disability, medically complex, mental health, you know, rare disease community, whatever, that you're going to just get more sad by being around people who are also in chronic hardship.

But the research has shown it's actually more energizing and it is a boost to your mental health. And the other, The thing that gets in the way is we just don't realize that it's our birthright to have a sense of belonging and to be in a loving, supportive community. So I'm here to say it's your birthright.

Jessica Fein: I love that. And it's interesting because, you know, I have always heard and read from moms of quote unquote typical kids that especially those early years can feel really isolating. So I think this notion of finding your community or creating your community is important for you. Everybody and then, you know, times a bazillion to be precise for this extreme parenting and you said that you have lots of ideas.

And if somebody wanted to take away, what are three ways that I could get out there and start to create or find community? What would you say? 

Jessica Patay: Well, one, I would say just. [00:34:00] Notice where you are. What are you doing in your everyday life that already exists? You know, where are you a frequent flyer? Is it at school?

Start to notice who's around you at drop off and pick up. If you go to the gym, if you're a part of some sort of club, if you're some sort of group, church, temple, notice who's around you and who do you kind of gravitate to? So kind of notice who is in your world. You certainly can start a book club. You certainly can say, oh, I'm going to talk to the special education teacher or my case carrier and have them connect to me with other parents.

Obviously, there's privacy laws, so you can ask therapists, pediatrician, you know, specialists, doctors who are in your world, child life specialists that you engage with at the hospital, social workers at the hospital. You can certainly have them connect you with other parents, and it just starts from there.

Jessica Fein: I love that. And I think, again, that's something that you don't have to be parenting on the precipice in order to be able to do. Thank you. Thank you. Thank you for elevating [00:35:00] and amplifying the voices of so many people. And I have to say, it was really exciting for me because reading the book, I saw not only people that I know from the rare disease world, but I also saw former guests on this show.

So people like Effie, of course, and Kelley Coleman and other people who have been on the show. Whether this is your world or not, these are stories that you want to hear. These are stories that matter and these are stories that can change how you see the world. 

Jessica Patay: Thank you so much. I really, really hope that it has amazing, beautiful repercussions for hundreds and thousands of people.

Jessica Fein:

Here are my takeaways from the conversation with Jessica. Number one, find and build your community. It can be life saving when raising a child with a disability or complex needs. Number two, practice radical self care. It is not a luxury, but a necessity to invest in your own mental health when you're a caregiver.

Number three, allow yourself to feel cyclical grief without judgment. It is normal for waves of grief to resurface. Number four, [00:36:00] creating community can be as simple as noticing who's already in your circles, asking providers for connections, or starting a book club. Number five, share your story openly and vulnerably.

It allows others to truly show up and support you. Number six, asking for help is your birthright. Number seven, do not buy into the myth that you have to do it all alone. No Parent Is meant to parent in isolation number eight, make your needs a priority. Putting yourself first ensures you can better care for your family.

And number nine, normalize setting boundaries. You cannot pour from an empty cup. Thanks so much for listening to today's episode. I hope you'll buy this book in anticipation of Mother's Day, and I hope you'll buy my book in anticipation of Mother's Day too. Have a great day. Talk to you next time. 

Music: I've got the whole at my fingertips.

I feel like flying. I feel infinite. I know [00:37:00] where the kind to think along some other lines, but will be fine.

Come along now. The sky is endless. Now we. We are limitless now. Come along now. The sky is endless now. We are limitless. We are limitless now. The sky is calling, calling out to me. Some new beginnings with endless possibilities. Are you with me? Can you hear me? I

come along now. The sky is endless. Now we're limitless. [00:38:00] We're limitless. Now. Come along now. The sky is endless. Now we're limitless. We're limitless Now. Are you with me? Now? Can. Can you hear me now, when I'm singing out, when I'm singing out? I've got the whole world at my fingertips. I feel like flying, I feel infinite.

I know that we're the kind to think along some other lines, but we'll be fine.