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Jessica Patay is Helping Caregivers Be Braver Together
Episode 6123rd May 2024 • The Uplifters • Aransas Savas
00:00:00 00:37:20

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When Jessica Patay's second son Ryan was born, she knew something was different. Ryan didn't cry like other newborns and had trouble feeding. After a month in the hospital with no answers, a DNA test finally revealed Ryan had Prader-Willi syndrome - a rare genetic disorder causing low muscle tone, developmental delays, and an insatiable hunger starting in childhood.

Jessica found herself thrown into the world of caregiving for a child with extraordinary needs. But she was fortunate to quickly find a local support group and mentor parents also caring for children with Prader-Willi. This community proved vital, giving Jessica the tools, understanding, and lifeline she needed to not just survive, but to thrive as a "caregiving mom."

Over time, Jessica turned to writing and blogging to share her raw, honest journey. This awakened her passion for bringing caregivers together and empowering them through connection and community. In 2017, she founded the non-profit We Are Brave Together to serve mothers like herself on the brave path of caregiving.

5 Uplifting Lessons in Jessica’s Story:

1. The power of shared stories: Sharing our truth allows us to heal and others to feel seen, heard, and validated.

2. Normalize asking for help: As caregivers, we must have the courage to voice our needs and allow others the opportunity to be supportive "uplifters" in our lives.

3. Surround yourself with believers: Having people who understand your mission and believe in your ability to grow as a leader is critical when starting any new venture.

4. Progress over perfection: You don't have to have everything perfectly planned. Take imperfect action by using the resources you do have and believing in your vision.

5. Self-care is essential: Carve out time for the activities, relationships, and solitude that refill your cup as a human being first.

Human beings are not machines meant to simply serve others. We all need community, compassion, and the courage to prioritize our own needs as well. Jessica's story inspires us to share our authentic struggles so we can uplift and be uplifted in return.

Check out the beautiful anthology Becoming Brave Together here.

Transcripts

Aransas Savas (:

Welcome to the Uplifters podcast. I'm your host, Aranza Savvas. And today I am joined by Jessica Pate, who is the founder and executive director of We Are Brave Together. Jessica, welcome. Thank you for being an Uplifter and for joining us on the Uplifters.

Jessica Patay (:

Thank you. I am always eager and excited to get to share my story.

Aransas Savas (:

. So where does your story begin, Jessica?

Jessica Patay (:

A long time ago, my parenting journey, began almost 24 years ago with my firstborn Luke. I have three kids, Luke, Ryan, and Kate. Ryan is my son who I say made me a caregiving mom. He is now 20 and when he was five weeks old, he was diagnosed with Prader-Willi syndrome, which is a rare genetic disorder. happy to describe it or explain it away because nobody's heard of it, nobody's heard of it. And then I, oh, absolutely, yes. And what you Google is just really sad and crazy when you read about it. At least that is how we felt when we were first Googling,, 20 years ago. And I have a third child, Kate, who is 18 and a half. Aransas Savas (01:39.406)

Yes, please do. Right. I was definitely Googling.

my world shifted dramatically when Ryan was born, my second son. When he was born, he didn't cry. You know, when newborns first come out and they scream bloody murder, he cried for a few seconds. And I remember that stood out to me because my firstborn

got kicked out of the nursery when we were in the hospital because he had his days and nights mixed up. He cried a lot. He was probably colicky and nobody told me that. Why didn't somebody tell me? Anyways, Ryan was so quiet and that stood out to me right away,. And then there were some medical issues right away, his breathing, some other stuff. They whisked him away. But I was still kind of in this like ooey gooey, I just had my second baby, you know, that first day. It wasn't really till the next day where

My pediatrician sat us down and probably our OB-GYN was there as well and said, we've got to run a bunch of tests. We spent a month in the hospital not knowing what was wrong. He couldn't suck, he couldn't cry, he could hardly move. We worked with an OT that specialized in feeding while we were in the hospital trying to wake up his mouth because when you need to learn how to suck, there's like a thousand things

go into that, that you just take for granted when you're first born was just able to feed so naturally and so easily. So we spent a month doing some tests, not getting any answers. And my husband asked for the test for Prader-Willi syndrome because he did some Googling. This was before smartphone. So I was not looking up anything in the hospital, which was good for me because I needed to just be present. I needed to pump around the clock. I needed to be there when the OT was trying to teach me how to work with Ryan's.

Aransas Savas (:

Yeah.

Jessica Patay (:

mouth and jaw and lips and all of it. And Googling would not have helped me during that month that I lived in the hospital. A week after we were discharged, Ryan had a feeding tube so we could go home because he was not catching up with the feeding thing. We got a call from our pediatrician and he was very kind and very gentle delivering the news that sure enough, Prader-Willi syndrome was confirmed by a DNA methylation analysis test. So.

Then our journey began and how to describe PWS in a nutshell, you're born with low muscle tone, so all milestones are delayed, gross motor, fine motor, speech. And then in childhood, what makes the news is this one sensationalistic crazy piece of the syndrome, and that is an insatiable food drive. So babies go from failure to thrive, which is a diagnosis when they can't eat.

eat, they can't suck, they can't cry for food, they don't cry for food, to food-seeking behavior. Now, the brain and the body don't tell kids and adults with the syndrome that they've had any food. So it leads to food-seeking behavior because along with a host of other symptoms, there's a lot of anxiety and obsessiveness that's very much a part of PWS. And with Brian, we didn't have to lock.

up our kitchen until he was 13. And then by the time he was 16, we had to become extremely vigilant. So I'm always checking the kitchen when I walk in the house. It's the first thing I do because I'm not the only person that lives in the house. I sometimes check in the middle of the night because I'm not the last person to go to bed. And the reason we have to lock it is because it's life threatening. Ryan could literally eat himself into a medical emergency or premature death if he were not watched and he didn't live with a locked.

kitchen. So we are vigilant, vigilant about the kitchen and about all food circumstances for sure. Anxiety, behaviors, intellectual disability, all of that is a part of PWS. There's a lot of symptoms that overlap with autism. Ryan was diagnosed at UCLA at age seven with autism or autistic-like disorder.

Jessica Patay (:

as well. But I view everything through the lens of Prader-Willi syndrome, the way he thinks, the way he acts, the way we handle things, what to say, what not to say, what to do, what not to do, all through the lens of PWS behavior training, which has been critical for us. I think I have a PhD in behavior management by now.

Aransas Savas (:

Isn't that interesting what we learn? And this is classified as a rare disease.

Jessica Patay (:

Yes, it is a rare disease.

Aransas Savas (:

And I think part of the challenge of rare disease is that there isn't an existing network oftentimes to support individuals and families who are managing this disease. So as you got this diagnosis, what supports were available to you, Ryan and your husband, and your kids for that matter?

Jessica Patay (:

Right, thank you. Right, exactly. The whole family needs support and help and community. Thankfully, even though it's rare, you wouldn't think it was rare by the amount of people that we found right away. At the time, and there still is, a Prader-Willi California Foundation, the offices were 20 minutes from my house. Is that serendipitous and beautiful and divine?

Aransas Savas (:

Oh my gosh. Ugh.

Jessica Patay (:

And so as soon as we got the diagnosis, my husband called PWCF and PWSA, which is based in Florida. It's the national organization. And we got a phone call right away. And I had a mentor. I had somebody who lived, again, 20 minutes away from me, who was going to be my mentor mom, who said I could call her at any time, ask any question. Her son was about five years ahead.

And so she had experience and expertise that I didn't have. And right away we went to our support group. The first support group we went to when Ryan was two months old, we found our people, we found our tribe, we found community, we found couples that we still spend time with and women that I still am on a text thread to this day, 20 years later. It was critical. It saved us. It literally saved us. I always say it saved our marriage

If we were doing this alone with no resource, no education, no conferences, no training, the stress is unbelievable. It's unbelievable. So to have no tools and no community around us, we would have been a disaster.

Aransas Savas (:

As much as anything I imagine, it's the normalizing of the fear and the worry and the inevitable mom guilt that happens even with the highest functioning child. And to have somebody around you to say, yeah,, it's okay, I understand yea.

Jessica Patay (:

Yeah, it's critical. I say that with any kind of crisis or chronic hardship or loss, you have to have other people in your life who get it. You know, whether you've lost a parent or a sibling or miscarriage or you go through infertility or any kind of crisis or hardship, you have to have other people in your life who have walked similar paths.

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

Yes, I agree. I think in every area of our lives, we are stronger together. Mothering is hard in the best of cases. It's emotionally and mentally taxing, rewarding. Yes, we all get it, but it's hard. So for you, what was the hardest part mentally and emotionally and even physically?

Jessica Patay (:

Yes it is.

Jessica Patay (:

Mm-hmm. Yes.

Jessica Patay (:

Mm-hmm.

Aransas Savas (:

of having a middle child with such extraordinary needs.

Jessica Patay (:

Hmm. I think, um, so many things.

Jessica Patay (:

It's mentally taxing because you feel like you're walking on eggshells when you have somebody that battles severe anxiety. Because you don't know what's going to trigger, or even if you do know what's going to trigger, is it going to trigger them today, tomorrow? I think the very first emotional hurdle to get over when you have a child with a diagnosis is, oh, life is not going to be what I thought.

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

The sibling experience is not gonna be what I thought. The parenting experience, the family life, it's all not gonna be what I thought, what I was dreaming and scheming about when I was pregnant. So you have to adjust and accept and grieve. So that's the first big hurdle. And then I worried so much about the impact on Luke and Kate.

Aransas Savas (:

Hehehe

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

And I still do, but they're all grown up and able to voice a lot now, which is great. We've done family therapy, which is critical. I highly recommend that for every family if you have access to it. Really in the early stages, I would have started much sooner, but it's never too late to repair. It's never too late to have hard conversations and to hear from your grown kids, the siblings. So that is definitely.

worrisome and you're trying to juggle all your time because so much time, energy and attention is taken by the child with extra extraordinary or extreme needs that then you'll never really be able to make it up to the siblings but you need to be intentional about the siblings and make sure you have one-on-one dates, one-on-one trips if that's even possible, pull them out of school when the others are in school and have a one-on-one day if that's

the only way you can do it. There's so many ways to be intentional with the siblings. We have a resource on our website if anyone's interested. So that's another emotional hurdle. And I wasn't necessarily worried about my marriage, honestly. I wasn't worried because I married a really great guy who from the beginning was in it with me. He was in the trenches with me. And at the time I was a stay at home mom.

Aransas Savas (:

Hmm.

Jessica Patay (:

He could have easily said, you handle Ryan. I go to work. I have a demanding job. I have to drive far. You handle Ryan. But he never made me feel like I was solo handling Ryan ever and still to this day. So I think I'm very, very lucky, blessed, fortunate to have married a great guy who was a hands-on dad with Luke and Ryan and Kate.

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

and still is and we got help when we needed it. We did couples therapy proactively, preventively, or when we weren't on the same page about something in parenting, we would get help. We would get somebody's opinion to help us stay on the same page.

Aransas Savas (:

how wise and you use the word proactive. And I think so often we treat symptoms that what I hear you doing is noticing needs and responding to those before they become symptoms. So you talk about how you cared for your children, how you cared for your marriage. How did you care for Jessica?

Jessica Patay (:

Oh, for real?

Yeah. Oh, for me, for me, for me. Well, I have to say that compulsive, being compulsive about exercise saved me. I haven't written a piece, but it's like floating in my head about it because when I got married, I was compulsive about running or just exercise in general. And after having kids, I still wanted to get back to running as soon as I could.

When I say running, I mean, you know, jogging slowly. I don't mean competitive. And so even after having Ryan, after having Kate, I always had to get back to running. I always had to get back to exercise in some way. And so because it was a have to, I asked for help. I asked for help from the beginning because I had this compulsion to exercise. And so I asked Chris,

Aransas Savas (:

Uh huh.

Jessica Patay (:

Can you take over so I can go for a run? I'll take over, you go for a run or what have you. That was always kind of in our marital DNA is that we would take those breaks to exercise. And so I started asking for help from the beginning versus getting into a pattern like moms do often to do everything and to think that they have to do everything and never take a break and never be separate from their child or their baby.

Aransas Savas (:

Yep.

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

And I just didn't think that way. I wanted date nights, I wanted girlfriend time, I wanted solo time. I knew I still needed those. Somehow, I don't know how, but I just did. And so I just always from the beginning expected breaks, expected the ability to step away, to care for myself. And it's letting other people love your children as much as you do.

Jessica Patay (:

Yes.

Aransas Savas (:

which ultimately is better for everyone. I took one night off a week from the time I went back to work,with both of my babies. it was terrifying,? To say, I know you've been at work this whole time because this was before men got

required to get any family leave. And so I was like, here, I know you're not really very familiar with this kid because you work weekends and you work overnight and this is all going to be new for you, but you'll figure it out. And I'm so glad I did because he did. He figured it out. He rose to the occasion just like I would have, just like any other mother would have. But it gave him a chance to succeed as a caregiving father.

Jessica Patay (:

Hmm.

Jessica Patay (:

Right, right. And partners need that. Partners need that, the kids need it. They need to know that they can handle things without you. It's good for the kids. It's good for the kids to realize, oh, I can handle it when mom's away. And while dad or mom, you know, whatever the scenario is, is doing a great job. I feel loved by this individual. I am safe with this individual. It's not all about whoever the primary caregiver is.

Aransas Savas (:

and kids need it.

Aransas Savas (:

Hmm

Aransas Savas (:

Well said, because that's what we're all really seeking, isn't it, a sense of safety and being known and connected. So speaking of being known and connected, I think for you, you mentioned journaling and writing, but I get from your work that writing about your experience and being open and honest about your experience was a big part of your own self-care and healing journey.

Jessica Patay (:

Yes.

Aransas Savas (:

So talk to me about that, how you found it, and what it's meant for you.

Jessica Patay (:

I've always been a lover of words. And in 2012, when blogging was a thing, one of my friends held my hand, set up the first blog. I literally had no clue. I just, I'm still not, I'm not still tech savvy. And, but I knew I wanted to write. I had been, I had been sharing in newsletters that were PWS specific.

either to the National Organization or our local California Foundation. So I found my writing voice there, sharing really honest stories. I think it was called like In the Trenches or something like that. And I just wrote whenever I had inspiration and submitted it. And then I thought, okay, I really want to do more. And started blogging. And immediately...

received feedback. Thank you so much for saying what I'm so afraid to say, but I wish I could say it. And I was really honest. I definitely am an oversharer. And of course, there were times when I was like, do I share too much? There wasn't ever a post where my husband said like, I read your post and I think you should take it down. Never. He was so supportive.

even if that's not his nature to go online and share his life. But he supported me sharing and it was absolutely cathartic and healing to share bits and pieces from the trenches of, altered motherhood as I call it.

I got so much wonderful feedback. I made so many beautiful connections online to fellow moms and it really gave me a voice. It really, you know, I feel like that all of that was also part of my origin story in Genesis for starting my organization.

Aransas Savas (:

what has that led you to in terms of finding purpose and connection, Jessica Patay (22:08.366)

. Well, I definitely saw how just sharing really honest stories was having an impact in validating other people's journeys and experiences and feelings. That was very fulfilling, very, very fulfilling. And along the way, I started doing these fluffy girlfriends retreats with one of my best friends, bringing women together because we just love bringing women together.

we started doing that also in:

And We Are Brave Together was a name that we dreamed up because we just believe in the collective power of being together. I am more brave when I'm in the presence of someone else who is brave. And it takes a lot of bravery and courage to be a caregiving mom. So we knew the name and we just started dreaming about serving moms.

who were caregivers. And so we just kind of went from there. She actually went to grad school and went back to work full time and said, I cannot be your co-founder, but yes, you can do this. Yes, you will do this. Yes, you must do this. And encouraged me and supported me. My husband was in full support as well of starting We Are Brave Together.

Aransas Savas (:

Were you nervous at the time?

Jessica Patay (:

Yes, because I've never done anything like that. we launched in 2017. So I'd been a mom for almost 17 years. I did some early consulting, I think, when Luke was a baby, when I had worked in clinical trials before kids, like a few months, maybe six months. And then I sold clothing through CABI, which is a wonderful organization.

for two years, four seasons. And that was also, that definitely, that whole experience also prepared me because I had to be in front of people. I had to do presentations. I had to shamelessly ask people to, will you host in your home this little shopping party? And it gave me so much confidence. It gave me so many great experiences going into We Are Brave. But I had never been a business owner or a...

Aransas Savas (:

Mmm.

Jessica Patay (:

a leader. I wasn't the kid who, you know, tried to be class president growing up. You know, I just, it was, it was new to me, but I was, and I was scared and I didn't know what I was doing, but I was compelled because of my passion and my burden. You know, that saying like calling is where passion and burdens collide. And that, that was it. I mean, I had such a heart for moms and special needs families. And

Aransas Savas (:

Mmm.

Jessica Patay (:

I was so passionate about the friendship of women and connection and community. I had to do something. So it's, it's been a, it's been such a learning journey, but I've had incredible people around me supporting me who were experienced leaders, experienced in the nonprofit world and sitting on boards who are a part of my team. So it's, there are times when things paralyze me, certain new ideas or dreams.

Aransas Savas (:

Hmm.

Jessica Patay (:

and then you find people to co-execute with you and then it gets a little bit less scary.

Aransas Savas (:

What were you most scared about not knowing when you started?

Jessica Patay (:

Just the how, like how do you create a website? How do you start a nonprofit organization? How do you fundraise? Just how, how do you do all, the tech, the tech side of all that's involved, that scared me. all the unknowns of how to, how to execute what I wanted to do.

Aransas Savas (:

Yeah.

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

I feel like at least half of the new, certainly women business owners who are listening to this are nodding along because for so many of us, our dreams are stopped by, but I don't know. And I hear in your story an answer that we all have access to, which is ask someone who knows.

Jessica Patay (:

Yes.

Jessica Patay (:

Yes.

ike I had help.Aransas Savas (:

Yeah, yeah, that's someone, maybe Google.

Jessica Patay (:

And they said to me, you're going to do just as much work, whether you're underneath their umbrella and they take a cut of your fundraising, or if you do your own nonprofit, you need to do your own nonprofit. But the how, thankfully I had two key people say I will be your secretary, I will be your treasurer, let's go. That's all you need to get started.

Aransas Savas (:

It's so true. and whether it's a for-profit or a non-for-profit, I think we just need a couple of people who are like, I trust you to figure this out. I believe in your mission and it's gonna be okay.

Jessica Patay (:

Yep, yep. I had a friend, one of the two that started off as a founding board member, before I even had, before we even were fundraising, said, here's a check for $1,000, what do you need it for? And I said, we have to have a website. We can't start this without a website. We launched with a logo, a business card, and an Excel spreadsheet of 100 names. and a lot of passion.

for our mission. And then we got a website several months later. And then we got our nonprofit status several months later. And then we were rocking and rolling. Thankfully, my husband funded us until we got our nonprofit status and could start fundraising. So again, kudos to the amazing husband.

Aransas Savas (:

kudos to the amazing husband, to the community, to using your resources, to trusting that you didn't have to have all the answers in order to get started by using what you did have and saying, okay, this will be our beginning., we get so hung up on, needing to have everything figured out.

Jessica Patay (:

Right. Yes.

Jessica Patay (:

Right.

Jessica Patay (:

Right, right. And that was me. I'm a recovering perfectionist. So I, oh yes, yes. Yes, yes, yes. Thank you. Thank you. I'm not alone. Yeah. So that will rear its head from time to time when it's time for a new project or a new take on a project or a new take on a fundraiser or something. Then I'm like...

Aransas Savas (:

Oh, welcome to the club. There are many of us here at Uplifters. We welcome you.

Jessica Patay (:

but it has to be perfect and I need to understand all the nuts and bolts right now and all the nuts and bolts have to be perfect and all my ducks have to be in a row. You just have to start and you have to have the right people around you that believe in your vision and believe in your ability to grow as a leader.

Aransas Savas (:

, and believe that making mistakes is part of the process.

Jessica Patay (:

Yes, yes. And also know that your mission is solid and that it is a mission worth fighting for and shamelessly asking for money for.

Aransas Savas (:

Yeah.

Aransas Savas (:

Yeah.

Yeah, yeah. I mean, I don't have a nonprofit. I have a mission. And so I ask people to engage with the mission because I believe the support is needed and the community is

Jessica Patay (:

Yes.

Jessica Patay (:

Mm-hmm.

Jessica Patay (:

Yes.

Aransas Savas (:

And that's what allows us to authentically seek support and provide service. Yeah.

Jessica Patay (:

Yes, yes. And people can see authenticity and it is a catalyst for others to support what you're doing.

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

Yeah, and hopefully for them to do what they need to do. And so part of what you've done here, I think, is create a space for other women to find purpose and impact in sharing their stories. So talk to me about this anthology that you've created. I love elevating women. I love supporting other women. Obviously, this is why I started We Are Raved Together. I am passionate about doing that. What better way to give validation to these women as writers?

What better way to give validation to their heroic, extraordinary, extreme caregiving but to put it in a book for the world to see? Because when you're the only person in somebody's world, like if you're sharing with your family and your friends, let's say you're the only one in those communities, whether it's your family or your group of friends, that has a child with a disability. Your people around you hear one story.

And it can be easy to minimize how extreme and extraordinary it is. But to read 22 stories and you see the through line, you see the fierce love and the fierce advocacy and the exhaustion, the isolation, the compassion, fatigue, the burnout, then your heart and your mind opens to the whole world, hopefully.

of disability and medical complexity and mental illness. And so I wanted to give writers who don't think they're writers an opportunity to share their story. I wanted to raise awareness about caregiving and caregivers because in our culture in the United States, we do not value caregivers and caregiving. There's 60 million unpaid caregivers in our country.

Yeah, we're saving the country billions and billions of dollars or we're saving somebody billions and billions of dollars by taking it on and being unpaid. Some states do pay caregiving moms or parents or caregivers, but most do not. And it should be nationwide. It should be in every country, but I won't get on my soapbox there. Okay. Thank you. Thank you. Thank you.

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

It's a soapbox worth getting on. And I will join you up there, yes. And there is a lot of legislation work to be done.

Jessica Patay (:

Thank you, thank you, thank you.

Jessica Patay (:

Yeah, there is. Yes. And that is definitely something I hope that We Are Brave can get into is more advocacy and activism and making those lasting, lasting changes. Because what we're doing is we're offering a little bit of rescue, right? And a little bit of help and resources, but it's not going to be enough. It's not going to be enough to teach moms how to truly engage in true self care. It's not going to be enough to give them a weekend off. It's not going to be enough to give them...

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

Mm-mm.

Jessica Patay (:

an inspirational podcast on a weekly basis. That's not enough, that will all help,but we have to change systems in order for parents not to burn out or all caregivers, let's just say, not to burn out, we have to change the system. So maybe this book will motivate people to change policies, to write new laws. So...

Aransas Savas (:

Mm-hmm, mm-hmm. But it's not gonna fix it.

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

Yeah, so I hope for this book that it validates every caregiving mom. I hope they feel seen and heard and understood. I got choked up.

by reading other people's stories and go, oh, that's me. That's me. I see myself in this book. So that is my hope. My hope is that caregiving moms will buy the book and then they'll buy more books for their friends and family because it will validate them when their friends and family see 22 stories. And I certainly hope that this will move anybody into action to change things for caregivers.

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

. Is there a story in the anthology that especially stands out to you?

Jessica Patay (:

One of our writers, Claire McMurray, the title of her story is Behind the Windows,And I feel like that is such a metaphor for moms in the caregiving role because there's so much that we are isolated from that we're watching. We're watching the world go by.

But we're tucked inside because it's safer, because it's safer for our child, because it's safer for us depending on what happens when you're out in the community, because people don't understand, because friends don't understand, just strangers don't understand, you know? And so...

Aransas Savas (:

Yeah,

Jessica Patay (:

There's an isolation and a loneliness that we live unless we are actively pursuing community. And even having community within the disability or medically complex world, you still have to live your life every day. And that still feels a little bit lonely. And...

Aransas Savas (:

Mm.

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

you sometimes just feel like you're watching the world go by.

Aransas Savas (:

Yeah, what a powerful image too. And to me, it is a call to action to reach out to the people in my life who may be feeling isolated or set apart and extend that hand. . So many folks in our audience are caregivers, whether they are caregiving for their elders, for their children, for partners. It is a place where our uplifters step in.

Jessica Patay (:

Mm-hmm.

Jessica Patay (:

Right.

Aransas Savas (:

to say, I will be the caregiver, I will take care, I will carry these burdens. And I think for so many of us, we end up with the Louisa complex where we are carrying it all alone and it can get very heavy, especially without the necessary supports, be it community or even professional supports to help just sort of hold it for a little while. Yeah.

Jessica Patay (:

Mm-hmm.

Jessica Patay (:

Mm-hmm.

Yes, yes, yes. Yes, and it's hard to ask for help to hold it, but we have to, we have to, we have to ask for help because it's not often gonna come to us where someone out of the blue says, hey, I'd like to bring you a dinner every Monday night.

Aransas Savas (:

Mm-hmm.

Aransas Savas (:

nobody knows what we need.

Jessica Patay (:

Nobody knows what we need. So, you know, I learned this in family therapy that parents are not mind readers, kids are not mind readers, therefore friends are not mind readers. You know that you figure that out early, hopefully in marriage. Oh, I have to ask for what I want and need because my partner is not going to know unless I ask specifically and explicitly. I need a break Friday night.

Aransas Savas (:

Mmm... Mm-hmm.

Jessica Patay (:

For three hours, I need to go to a cafe and be by myself.

Aransas Savas (:

Mm-hmm.

Jessica Patay (:

chances of your spouse saying, hey, I'd like to give you Friday night to just go sit in a cafe by yourself with your journal and your favorite book. Yeah, some to none, because you have to tell them. It's the same with what we need as humans. We have to tell people, we have to ask for help, but we live in a culture that goes against that, that says that that's somehow weak. We've been indoctrinated to, we have to do it all ourselves. Well, that is such BS, it's not true.

Aransas Savas (:

Right? Slut man.

Aransas Savas (:

Mm-hmm. I agree.

Jessica Patay (:

and it only kills us mentally, emotionally, relationally. And we just have to not be afraid to say, this is what I need.

Aransas Savas (:

Yeah, and to ask ourselves what we need, right? It's so easy for us to get out of touch with our own needs. And so you talk about meditation and journaling. I often figure it out through talking to other people. And I got to know my symptoms, like, oh, I made up some grumpy story about that woman in the gym today. What's up with me? I would not normally do that, right? So those little moments where we're like out of integrity with ourselves.

Jessica Patay (:

Yes.

Jessica Patay (:

Right.

Jessica Patay (:

Yes.

Aransas Savas (:

It's like getting curious about those. And if you're a verbal processor like me, talking it out to somebody, if you're a written processor, writing it out, but that's really the first step, isn't it? And then the courage to ask.

Jessica Patay (:

Yes.

Yes, yes, for sure. And you by asking for help is giving other people the opportunity to be an uplifter.

Aransas Savas (:

Mmm, so well said Jessica, yes!

Jessica Patay (:

when we fundraise, we are giving people the opportunity to be generous. When you're asking somebody to be helpful in whatever way, like, could you be the person that just picks up the prescriptions for me? That's one task that would be incredibly helpful. I'm not asking you to babysit my kid. I'm not asking you to figure out how to work a G tube. I'm just asking for you to pick up.

the medications once a week? You're giving that person an opportunity to be an uplifter in your life. And how good are they gonna feel like, ah, I get to do this? But we downplay the beautiful repercussions of asking for help.

Aransas Savas (:

Yeah.

Aransas Savas (:

Guess.

Aransas Savas (:

And then we carry it all and then we end up resentful and we end up not our best selves and feeling all the guilt and shame and then carry more to deal with the guilt. It's a vicious cycle. And so it is better for everyone involved to ask for support, first from ourselves and then from others.

Jessica Patay (:

Yeah, great.

Yeah, can we? Yes, yes. And why can't we just normalize that? Why can't we normalize asking for help? Yeah.

Aransas Savas (:

Yes, let's do it. Yeah, yeah. And celebrate how good it feels to be seen, to be cared for, and to give and to care. Oh, Jessica, I'm so glad you exist in the world.

Jessica Patay (:

Yes!

Jessica Patay (:

Aww. Thank you. Thank you. Will you tell my kids? Just kidding. Well, they see it all, right?

Aransas Savas (:

I will, I have a feeling they understand that. I'm glad you're, yeah. that's important too. I think it's important for our kids to know we're human beings and not automaton machines who are just there to serve, right? Like this is a human being

Aransas Savas (:

I'm so excited to read more of Brave Together. And I hope that our Uplifter community will read it as well and see themselves in these stories and those they love in these stories and find greater compassion and understanding. As you say, we can all just hold hands and collectively normalize asking for help. Normalize making mistakes.

Jessica Patay (:

Thank you.

Jessica Patay (:

Yes.

Aransas Savas (:

normalize, allowing ourselves to be seen.

Jessica Patay (:

Yes, yes, yes. Thank you.

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