Latest / The Uplifters / Episode 61: Jessica Patay is Helping Caregivers Be Braver Together

Transcript

Episode 61: Jessica Patay is Helping Caregivers Be Braver Together · The Uplifters

• 0:05
  SPEAKER_02: An uplifter is a compelling leader who tries to breathe life and hope into people around them.
• 0:12
  SPEAKER_01: Who listen and care and guide and help.
• 0:17
  SPEAKER_00: Whose way of being in the world inspires.
• 0:20
  SPEAKER_00: Who uplifts with humor and understanding.
• 0:23
  SPEAKER_00: Who leads by example.
• 0:24
  SPEAKER_02: Don't judge.
• 0:26
  SPEAKER_02: Vulnerable.
• 0:26
  SPEAKER_02: Bold.
• 0:27
  SPEAKER_02: Determination.
• 0:29
  SPEAKER_02: Who are here to create a better world.
• 0:33
  SPEAKER_02: Who can learn and teach.
• 0:35
  SPEAKER_00: Who encourages you.
• 0:36
  SPEAKER_00: Who shines their light to lead other people.
• 0:40
  SPEAKER_00: Who uses their best self in order to help others.
• 0:42
  SPEAKER_00: I found the life that I liked and I worked toward that.
• 0:46
  SPEAKER_01: We are all uplifters.
• 0:47
  SPEAKER_01: Big love.
• 0:48
  SPEAKER_01: We do.
• 0:51
  SPEAKER_01: Welcome to the Uplifters podcast.
• 0:53
  SPEAKER_01: I'm your host, Aranza Savas.
• 0:55
  SPEAKER_01: And today I am joined by Jessica Apte,
• 0:58
  SPEAKER_01: who is the founder and executive director of We Are Brave Together.
• 1:03
  SPEAKER_01: Jessica, welcome.
• 1:04
  SPEAKER_01: Thank you for being an Uplifter and for joining us on the Uplifters.
• 1:10
  SPEAKER_00: Thank you.
• 1:10
  SPEAKER_00: I am always eager and excited to get to share my stories.
• 1:15
  SPEAKER_00: So where does your story begin, Jessica?
• 1:17
  SPEAKER_00: A long time ago.
• 1:19
  SPEAKER_00: My parenting journey began almost 24 years ago with my firstborn, Luke.
• 1:25
  SPEAKER_00: I have three kids, Luke, Ryan, and Kate.
• 1:29
  SPEAKER_00: Ryan is my son, who I say made me a caregiving mom.
• 1:32
  SPEAKER_00: He is now 20.
• 1:34
  SPEAKER_00: And when he was five weeks old,
• 1:35
  SPEAKER_00: he was diagnosed with Prader-Willi syndrome,
• 1:38
  SPEAKER_00: which is a rare genetic disorder.
• 1:41
  SPEAKER_00: Happy to describe it or explain it away.
• 1:43
  SPEAKER_01: Yes, please do.
• 1:45
  SPEAKER_00: Nobody's heard of it.
• 1:45
  SPEAKER_00: Nobody's heard of it.
• 1:46
  SPEAKER_01: I was definitely Googling.
• 1:48
  SPEAKER_00: Oh, absolutely.
• 1:49
  SPEAKER_00: Yes.
• 1:49
  SPEAKER_00: And what you Google is just really sad and crazy when you read about it.
• 1:54
  SPEAKER_00: At least that is how we felt when we were first Googling 20 years ago.
• 1:58
  SPEAKER_00: And I have a third child, Kate, who is 18 and a half.
• 2:02
  SPEAKER_00: Well, my world shifted dramatically when Ryan was born, my second son.
• 2:07
  SPEAKER_00: When he was born, he didn't cry.
• 2:10
  SPEAKER_00: You know, when newborns first come out and they scream bloody murder, he cried for a few seconds.
• 2:16
  SPEAKER_00: And I remember that stood out to me because my firstborn got kicked out of the
• 2:22
  SPEAKER_00: nursery when we were in the hospital because he had his days and nights mixed up.
• 2:26
  SPEAKER_00: He cried a lot.
• 2:27
  SPEAKER_00: He was probably colicky and nobody told me that.
• 2:30
  SPEAKER_00: Why didn't somebody tell me?
• 2:31
  SPEAKER_00: Anyways,
• 2:32
  SPEAKER_00: Ryan was so quiet and that stood out to me right away.
• 2:34
  SPEAKER_00: And then there were some medical issues right away,
• 2:37
  SPEAKER_00: his breathing,
• 2:38
  SPEAKER_00: some other stuff,
• 2:39
  SPEAKER_00: they whisked him away.
• 2:40
  SPEAKER_00: But I was still kind of in this like ooey gooey, I just had my second baby, you know, that first day.
• 2:45
  SPEAKER_00: It wasn't really till the next day where my pediatrician sat us down and probably
• 2:51
  SPEAKER_00: our OB-GYN was there as well and said,
• 2:54
  SPEAKER_00: we've got to run a bunch of tests.
• 2:57
  SPEAKER_00: And we spent a month in the hospital not knowing what was wrong.
• 3:00
  SPEAKER_00: He couldn't suck.
• 3:00
  SPEAKER_00: He couldn't cry.
• 3:01
  SPEAKER_00: He could hardly move.
• 3:02
  SPEAKER_00: We worked with an OT that specialized in feeding while we were in the hospital
• 3:07
  SPEAKER_00: trying to wake up his mouth.
• 3:08
  SPEAKER_00: Because when you need to learn how to suck,
• 3:10
  SPEAKER_00: there's like a thousand things that go into that that you just take for granted
• 3:14
  SPEAKER_00: when you're first born was just able to feed so naturally and so easily.
• 3:18
  SPEAKER_00: So we spent a month doing some tests, not getting any answers.
• 3:22
  SPEAKER_00: And my husband asked for the test for Prader-Willi syndrome because he did some Googling.
• 3:27
  SPEAKER_00: This was before smartphones.
• 3:28
  SPEAKER_00: So I was not looking up anything in the hospital,
• 3:31
  SPEAKER_00: which was good for me because I needed to just be present.
• 3:34
  SPEAKER_00: I needed to pump around the clock.
• 3:36
  SPEAKER_00: I needed to be there when the OT was trying to teach me how to work with Ryan's
• 3:40
  SPEAKER_00: mouth and jaw and lips and all of it.
• 3:43
  SPEAKER_00: And Googling would not have helped me during that month that I lived in the hospital.
• 3:48
  SPEAKER_00: A week after we were discharged,
• 3:50
  SPEAKER_00: Ryan had a feeding tube so we could go home because he was not catching up with the
• 3:53
  SPEAKER_00: feeding thing.
• 3:54
  SPEAKER_00: We got a call from our pediatrician and he was very kind and very gentle delivering
• 3:58
  SPEAKER_00: the news that sure enough,
• 4:00
  SPEAKER_00: Prader-Willi syndrome was confirmed by a DNA methylation analysis test.
• 4:04
  SPEAKER_00: So then our journey began and how to describe PWS in a nutshell, you're born with low muscle tone.
• 4:12
  SPEAKER_00: So all milestones are delayed, gross motor, fine motor, speech.
• 4:15
  SPEAKER_00: And then in childhood,
• 4:17
  SPEAKER_00: what makes the news is this one sensationalistic,
• 4:20
  SPEAKER_00: crazy piece of the syndrome,
• 4:22
  SPEAKER_00: and that is an insatiable food drive.
• 4:24
  SPEAKER_00: So babies go from failure to thrive,
• 4:27
  SPEAKER_00: which is a diagnosis when they can't eat,
• 4:30
  SPEAKER_00: they can't suck,
• 4:30
  SPEAKER_00: they can't cry for food,
• 4:31
  SPEAKER_00: they don't cry for food,
• 4:33
  SPEAKER_00: to food seeking behavior.
• 4:35
  SPEAKER_00: Now, the brain and the body don't tell kids and adults with the syndrome that they've had any food.
• 4:41
  SPEAKER_00: So it leads to food-seeking behavior because along with a host of other symptoms,
• 4:46
  SPEAKER_00: there's a lot of anxiety and obsessiveness that's very much a part of PWS.
• 4:52
  SPEAKER_00: And with Brian, we didn't have to lock up our kitchen until he was 13.
• 4:56
  SPEAKER_00: And then by the time he was 16, we had to become extremely vigilant.
• 5:00
  SPEAKER_00: So I'm always checking the kitchen when I walk in the house.
• 5:04
  SPEAKER_00: It's the first thing I do because I'm not the only person that lives in the house.
• 5:07
  SPEAKER_00: I sometimes check in the middle of the night because I'm not the last person to go to bed.
• 5:11
  SPEAKER_00: And the reason we have to lock it is because it's life-threatening.
• 5:15
  SPEAKER_00: Ryan could literally eat himself into a medical emergency or premature death if he
• 5:18
  SPEAKER_00: were not watched and he didn't live with a locked kitchen.
• 5:23
  SPEAKER_00: So we are vigilant, vigilant, vigilant about the kitchen and about all food circumstances for sure.
• 5:30
  SPEAKER_00: anxiety, behaviors, intellectual disability, all of that is a part of PWS.
• 5:37
  SPEAKER_00: There's a lot of symptoms that overlap with autism.
• 5:39
  SPEAKER_00: Ryan was diagnosed at UCLA at age seven with autism or autistic-like disorder as well.
• 5:45
  SPEAKER_00: But I view everything through the lens of Prader-Willi syndrome,
• 5:48
  SPEAKER_00: the way he thinks,
• 5:49
  SPEAKER_00: the way he acts,
• 5:50
  SPEAKER_00: the way we handle things,
• 5:52
  SPEAKER_00: what to say,
• 5:53
  SPEAKER_00: what not to say,
• 5:54
  SPEAKER_00: what to do,
• 5:54
  SPEAKER_00: what not to do,
• 5:55
  SPEAKER_00: all through the lens of PWS behavior training,
• 5:58
  SPEAKER_00: which has been critical.
• 6:00
  SPEAKER_00: For us, I think I have a PhD in behavior management by now.
• 6:03
  SPEAKER_01: Isn't that interesting what we learn?
• 6:05
  SPEAKER_01: And this is classified as a rare disease?
• 6:07
  SPEAKER_01: Yes, it is a rare disease.
• 6:09
  SPEAKER_01: And I think part of the challenge of rare disease is that
• 6:13
  SPEAKER_01: There isn't an existing network oftentimes to support individuals and families who
• 6:20
  SPEAKER_01: are managing this disease.
• 6:22
  SPEAKER_01: So as you got this diagnosis, what supports were available to you, Ryan, and your husband?
• 6:31
  SPEAKER_00: Right.
• 6:31
  SPEAKER_01: Thank you.
• 6:32
  SPEAKER_01: And your kids for that matter.
• 6:33
  SPEAKER_00: Right.
• 6:33
  SPEAKER_00: Exactly.
• 6:34
  SPEAKER_00: The whole family needs support and help and community.
• 6:38
  SPEAKER_00: Thankfully,
• 6:39
  SPEAKER_00: even though it's rare,
• 6:40
  SPEAKER_00: you wouldn't think it was rare by the amount of people that we found right away.
• 6:44
  SPEAKER_00: At the time,
• 6:45
  SPEAKER_00: and there still is,
• 6:46
  SPEAKER_00: a Prader-Willi,
• 6:47
  SPEAKER_00: California foundation,
• 6:49
  SPEAKER_00: the offices were 20 minutes from my house.
• 6:52
  SPEAKER_00: Oh my gosh.
• 6:53
  SPEAKER_00: Is that serendipitous and beautiful and divine?
• 6:56
  SPEAKER_00: Yes.
• 6:56
  SPEAKER_00: And so as soon as we got the diagnosis, my husband called PWCF and PWSA, which is based in Florida.
• 7:03
  SPEAKER_00: It's the national organization.
• 7:05
  SPEAKER_00: And we got a phone call right away.
• 7:07
  SPEAKER_00: And I had a mentor.
• 7:09
  SPEAKER_00: I had somebody who lived,
• 7:11
  SPEAKER_00: again,
• 7:11
  SPEAKER_00: 20 minutes away from me,
• 7:13
  SPEAKER_00: who was going to be my mentor mom,
• 7:14
  SPEAKER_00: who said I could call her at any time,
• 7:16
  SPEAKER_00: ask any question.
• 7:18
  SPEAKER_00: Her son was about five years ahead of
• 7:20
  SPEAKER_00: And so she had experience and expertise that I didn't have.
• 7:25
  SPEAKER_00: And right away, we went to our support group.
• 7:28
  SPEAKER_00: The first support group we went to when Ryan was two months old,
• 7:31
  SPEAKER_00: we found our people,
• 7:33
  SPEAKER_00: we found our tribe,
• 7:33
  SPEAKER_00: we found community,
• 7:34
  SPEAKER_00: we found couples that we still spend time with and women that I still am on a text
• 7:39
  SPEAKER_00: thread to this day,
• 7:40
  SPEAKER_00: 20 years later.
• 7:41
  SPEAKER_00: It was critical.
• 7:43
  SPEAKER_00: It saved us.
• 7:43
  SPEAKER_00: It literally saved us.
• 7:44
  SPEAKER_00: I always say it saved our marriage because if we were doing this alone with no resource,
• 7:51
  SPEAKER_00: no education,
• 7:52
  SPEAKER_00: no conferences,
• 7:53
  SPEAKER_00: no training,
• 7:54
  SPEAKER_00: the stress is unbelievable.
• 7:57
  SPEAKER_00: It's unbelievable.
• 7:59
  SPEAKER_00: So to have no tools and no community around us, we would have been a disaster.
• 8:06
  SPEAKER_01: As much as anything,
• 8:07
  SPEAKER_01: I imagine it's the normalizing of the fear and the worry and the inevitable mom
• 8:14
  SPEAKER_01: guilt that happens even with the highest functioning child.
• 8:18
  SPEAKER_01: And to have somebody around you to say, yeah, it's okay.
• 8:21
  SPEAKER_01: I understand.
• 8:22
  SPEAKER_01: Yeah.
• 8:23
  SPEAKER_00: Yeah, it's critical.
• 8:24
  SPEAKER_00: I say that with any kind of crisis or chronic hardship or loss,
• 8:29
  SPEAKER_00: you have to have other people in your life who get it.
• 8:33
  SPEAKER_00: You know, whether you've lost a parent or a
• 8:40
  SPEAKER_00: Any kind of crisis or hardship,
• 8:43
  SPEAKER_00: you have to have other people in your life who have walked similar paths.
• 8:48
  SPEAKER_00: Yes, I agree.
• 8:49
  SPEAKER_01: I think in every area of our lives, we are stronger together.
• 8:53
  SPEAKER_01: Yep.
• 8:54
  SPEAKER_01: Mothering is hard in the best of cases.
• 8:57
  SPEAKER_01: Yes, it is.
• 8:58
  SPEAKER_01: It's emotionally and mentally taxing, rewarding.
• 9:03
  SPEAKER_01: Yes, we all get it.
• 9:04
  SPEAKER_01: Yes.
• 9:04
  SPEAKER_01: But it's hard.
• 9:05
  SPEAKER_01: So for you,
• 9:06
  SPEAKER_01: what was the hardest part mentally and emotionally and even physically of having a
• 9:13
  SPEAKER_01: middle child with such extraordinary needs?
• 9:18
  SPEAKER_00: I think so many things.
• 9:20
  SPEAKER_00: It's mentally taxing because you feel like you're walking on eggshells when you
• 9:24
  SPEAKER_00: have somebody that battles severe anxiety because you don't know what's going to trigger.
• 9:29
  SPEAKER_00: Or even if you do know what's going to trigger, is it going to trigger them today, tomorrow?
• 9:34
  SPEAKER_00: I think the very first emotional hurdle to get over when you have a child with a
• 9:39
  SPEAKER_00: diagnosis is,
• 9:41
  SPEAKER_00: oh,
• 9:42
  SPEAKER_00: life is not going to be what I thought.
• 9:43
  SPEAKER_00: The sibling experience is not going to be what I thought.
• 9:46
  SPEAKER_00: The parenting experience,
• 9:48
  SPEAKER_00: the family life,
• 9:49
  SPEAKER_00: it's all not going to be what I thought,
• 9:51
  SPEAKER_00: what I was dreaming and scheming about when I was pregnant.
• 9:53
  SPEAKER_00: So you have to adjust and accept and grieve.
• 9:56
  SPEAKER_03: Mm-hmm.
• 9:57
  SPEAKER_00: So that's the first big hurdle.
• 10:00
  SPEAKER_00: And then I worried so much about the impact on Luke and Kate.
• 10:05
  SPEAKER_00: And I still do, but they're all grown up and able to voice a lot now, which is great.
• 10:10
  SPEAKER_00: We've done family therapy, which is critical.
• 10:12
  SPEAKER_00: I highly recommend that for every family if you have kids.
• 10:15
  SPEAKER_00: access to it.
• 10:16
  SPEAKER_00: Really in the early stages, I would have started much sooner, but it's never too late to repair.
• 10:21
  SPEAKER_00: It's never too late to have hard conversations and to hear from your grown kids, the siblings.
• 10:27
  SPEAKER_00: So that is definitely worrisome and you're trying to juggle all your time because
• 10:33
  SPEAKER_00: so much time,
• 10:33
  SPEAKER_00: energy and attention is taken by the child with extra extraordinary or extreme
• 10:38
  SPEAKER_00: needs that then
• 10:40
  SPEAKER_00: You'll never really be able to make it up to the siblings,
• 10:43
  SPEAKER_00: but you need to be intentional about the siblings and make sure you have one-on-one dates,
• 10:49
  SPEAKER_00: one-on-one trips,
• 10:50
  SPEAKER_00: if that's even possible.
• 10:52
  SPEAKER_00: Pull them out of school when the others are in school and have a one-on-one day if
• 10:56
  SPEAKER_00: that's the only way you can do it.
• 10:59
  SPEAKER_00: There's so many ways to be intentional with the siblings.
• 11:02
  SPEAKER_00: We have a resource on our website if anyone's interested.
• 11:05
  SPEAKER_00: So that's another emotional hurdle.
• 11:07
  SPEAKER_00: And I wasn't necessarily worried about my marriage, honestly.
• 11:11
  SPEAKER_00: I wasn't worried because I married a really great guy who from the beginning was in it with me.
• 11:18
  SPEAKER_00: He was in the trenches with me.
• 11:20
  SPEAKER_00: And at the time I was a stay-at-home mom, he could have easily said, you handle Ryan.
• 11:25
  SPEAKER_03: Mm-hmm.
• 11:25
  SPEAKER_00: I go to work.
• 11:27
  SPEAKER_00: I have a demanding job.
• 11:28
  SPEAKER_00: I have to drive far.
• 11:30
  SPEAKER_00: You handle Ryan.
• 11:31
  SPEAKER_00: But he never made me feel like I was solo handling Ryan ever and still to this day.
• 11:38
  SPEAKER_00: So I think I'm very,
• 11:41
  SPEAKER_00: very,
• 11:41
  SPEAKER_00: very lucky,
• 11:42
  SPEAKER_00: blessed,
• 11:43
  SPEAKER_00: fortunate to have married a great guy who was a hands-on dad with Luke and Ryan and
• 11:48
  SPEAKER_00: Kate and still is.
• 11:50
  SPEAKER_00: And...
• 11:51
  SPEAKER_00: We got help when we needed it.
• 11:53
  SPEAKER_00: We did couples therapy proactively,
• 11:55
  SPEAKER_00: preventively,
• 11:56
  SPEAKER_00: or when we weren't on the same page about something in parenting.
• 12:00
  SPEAKER_00: We would get help.
• 12:00
  SPEAKER_00: We would get somebody's opinion to help us stay on the same page.
• 12:04
  SPEAKER_01: How wise.
• 12:07
  SPEAKER_01: And you use the word proactive.
• 12:09
  SPEAKER_01: And I think so often we treat symptoms proactively.
• 12:12
  SPEAKER_01: But what I hear you doing is noticing needs and responding to those before they become symptoms.
• 12:21
  SPEAKER_01: So you talk about how you cared for your children, how you cared for your marriage.
• 12:25
  SPEAKER_01: How did you care for Jessica?
• 12:28
  SPEAKER_00: Oh, for me, for me, for me.
• 12:30
  SPEAKER_00: Well, I have to say that compulsive, being compulsive about exercise saved me.
• 12:35
  SPEAKER_00: I haven't written a piece,
• 12:36
  SPEAKER_00: but it's like floating in my head about it because when I got married,
• 12:41
  SPEAKER_00: I was compulsive about running or just exercise in general.
• 12:45
  SPEAKER_00: And after having kids, I still wanted to get back to running as soon as I could.
• 12:50
  SPEAKER_00: And when I say running, I mean, you know, jogging slowly.
• 12:53
  SPEAKER_00: I don't mean competitive.
• 12:54
  SPEAKER_00: And so even...
• 12:56
  SPEAKER_00: After having Ryan, after having Kate, I always had to get back to running.
• 13:00
  SPEAKER_00: I always had to get back to exercise in some way.
• 13:04
  SPEAKER_00: And so because it was a have to, I asked for help.
• 13:08
  SPEAKER_00: I asked for help from the beginning because I had this compulsion to exercise.
• 13:14
  SPEAKER_00: So I asked Chris, can you take over so I can go for a run?
• 13:18
  SPEAKER_00: I'll take over, you go for a run or what have you.
• 13:21
  SPEAKER_00: That was always kind of in our...
• 13:23
  SPEAKER_00: Marital DNA is that we would take those breaks to exercise.
• 13:28
  SPEAKER_00: So I started asking for help from the beginning versus getting into a pattern like
• 13:33
  SPEAKER_00: moms do often to do everything.
• 13:36
  SPEAKER_01: Yep.
• 13:37
  SPEAKER_00: And to think that they have to do everything and never take a break and never be
• 13:41
  SPEAKER_00: separate from their child or their baby.
• 13:43
  SPEAKER_00: And I just didn't think that way.
• 13:45
  SPEAKER_00: I wanted date nights.
• 13:47
  SPEAKER_00: I wanted girlfriend time.
• 13:49
  SPEAKER_00: I wanted solo time.
• 13:51
  SPEAKER_00: I knew I still needed those.
• 13:53
  SPEAKER_00: Somehow, I don't know how, but I just did.
• 13:57
  SPEAKER_00: And so I just always from the beginning expected breaks,
• 14:01
  SPEAKER_00: expected the ability to step away to care for myself.
• 14:05
  SPEAKER_01: It's letting other people love your children as much as you do.
• 14:09
  SPEAKER_01: which ultimately is better for everyone.
• 14:11
  SPEAKER_01: I took one night off a week from the time I went back to work with both of my babies.
• 14:19
  SPEAKER_01: It was terrifying to say,
• 14:21
  SPEAKER_01: I know you've been at work this whole time because this was before men got required
• 14:26
  SPEAKER_01: to get any family leave.
• 14:27
  SPEAKER_01: And so I was like,
• 14:29
  SPEAKER_01: here,
• 14:29
  SPEAKER_01: I know you're not really very familiar with this kid because you work weekends and
• 14:33
  SPEAKER_01: you work overnight and this is all going to be new for you,
• 14:35
  SPEAKER_01: but you'll figure it out.
• 14:36
  SPEAKER_01: Yep.
• 14:37
  SPEAKER_01: And I'm so glad I did because he did.
• 14:39
  SPEAKER_01: He figured it out.
• 14:40
  SPEAKER_01: He rose to the occasion just like I would have, just like any other mother would have.
• 14:44
  SPEAKER_01: Right.
• 14:44
  SPEAKER_01: But it gave him a chance.
• 14:47
  SPEAKER_01: to succeed as a caregiving father.
• 14:50
  SPEAKER_01: Right.
• 14:51
  SPEAKER_00: And partners need that.
• 14:52
  SPEAKER_00: And kids need it.
• 14:53
  SPEAKER_00: Partners need that.
• 14:55
  SPEAKER_00: The kids need it.
• 14:56
  SPEAKER_00: They need to know that they can handle things without you.
• 14:59
  SPEAKER_00: It's good for the kids.
• 15:00
  SPEAKER_00: It's good for the kids to realize, oh, I can handle it when mom's away.
• 15:04
  SPEAKER_00: And well, dad or mom, whatever the scenario is, is doing a great job.
• 15:10
  SPEAKER_00: I feel loved by this individual.
• 15:12
  SPEAKER_00: I am safe with this individual.
• 15:14
  SPEAKER_00: It's not all about
• 15:15
  SPEAKER_00: whoever the primary caregiver is.
• 15:17
  SPEAKER_01: Well said, because that's what we're all really seeking, isn't it?
• 15:20
  SPEAKER_01: A sense of safety and being known and connected.
• 15:23
  SPEAKER_01: Yep.
• 15:24
  SPEAKER_01: So speaking of being known and connected, I think
• 15:27
  SPEAKER_01: For you,
• 15:28
  SPEAKER_01: you mentioned journaling and writing,
• 15:30
  SPEAKER_01: but I get from your work that writing about your experience and being open and
• 15:36
  SPEAKER_01: honest about your experience was a big part of your own self-care and healing journey.
• 15:42
  SPEAKER_01: Yes.
• 15:43
  SPEAKER_01: So talk to me about that, how you found it and what it's meant for you.
• 15:48
  SPEAKER_00: I've always been a lover of words.
• 15:50
  SPEAKER_00: And in 2012, when blogging was a thing, one of my friends held my hand, set up the first blog.
• 15:57
  SPEAKER_00: I literally had no clue.
• 15:59
  SPEAKER_00: I just, I'm still not, I'm not still tech savvy, but I knew I wanted to write.
• 16:04
  SPEAKER_00: I had been sharing in newsletters that were PWS specific,
• 16:08
  SPEAKER_00: either to the national organization or local California foundation.
• 16:12
  SPEAKER_00: So I
• 16:12
  SPEAKER_00: Found my writing voice there sharing really honest stories.
• 16:16
  SPEAKER_00: I think it was called like in the trenches or something like that.
• 16:20
  SPEAKER_00: And I just wrote whenever I had inspiration and submitted it.
• 16:24
  SPEAKER_00: And then I thought,
• 16:25
  SPEAKER_00: okay,
• 16:25
  SPEAKER_00: I really want to do more and started blogging and immediately received feedback.
• 16:33
  SPEAKER_00: Thank you so much for saying what I'm so afraid to say, but I wish I could say it.
• 16:38
  SPEAKER_00: And I was really honest.
• 16:39
  SPEAKER_00: I definitely am an oversharer.
• 16:42
  SPEAKER_00: And of course, there were times when I was like, do I share too much?
• 16:45
  SPEAKER_00: There wasn't ever a post where my husband said like,
• 16:48
  SPEAKER_00: I read your post and I think you should take it down.
• 16:51
  SPEAKER_00: Never.
• 16:51
  SPEAKER_00: He was so supportive, even if that's not his nature to go online and share his life.
• 16:58
  SPEAKER_00: But he supported me sharing and it was absolutely cathartic and healing to share.
• 17:04
  SPEAKER_00: bits and pieces from the trenches of altered motherhood, as I call it.
• 17:07
  SPEAKER_00: And I got so much wonderful feedback.
• 17:10
  SPEAKER_00: I made so many beautiful connections online to fellow moms.
• 17:14
  SPEAKER_00: And it really gave me a voice.
• 17:16
  SPEAKER_00: It really,
• 17:17
  SPEAKER_00: you know,
• 17:17
  SPEAKER_00: I feel like that all of that was also part of my origin story and genesis for
• 17:22
  SPEAKER_00: starting my organization.
• 17:24
  SPEAKER_01: What has that led you to in terms of finding purpose and connection?
• 17:31
  SPEAKER_00: Well,
• 17:31
  SPEAKER_00: I definitely saw how just sharing really honest stories was having an impact in
• 17:36
  SPEAKER_00: validating other people's journeys and experiences and feelings.
• 17:40
  SPEAKER_00: That was very fulfilling.
• 17:42
  SPEAKER_00: Very, very, very fulfilling.
• 17:44
  SPEAKER_00: And along the way,
• 17:46
  SPEAKER_00: I started doing these fluffy girlfriends retreats with one of my best friends,
• 17:51
  SPEAKER_00: bringing women together because we just love bringing women together.
• 17:55
  SPEAKER_00: And it could be an intimate group.
• 17:57
  SPEAKER_00: We'd hire a speaker,
• 17:58
  SPEAKER_00: we'd pick a location,
• 17:59
  SPEAKER_00: stay at a hotel and,
• 18:01
  SPEAKER_00: you know,
• 18:01
  SPEAKER_00: just have a girls trip,
• 18:03
  SPEAKER_00: but have some inspiration as well.
• 18:05
  SPEAKER_00: And we started doing that also in 2012.
• 18:08
  SPEAKER_00: And then in 2016, we turned to each other when we were at our Nashville retreat.
• 18:14
  SPEAKER_00: And we said, this is all well and good, but it's expensive.
• 18:17
  SPEAKER_00: And how could it really meet a need?
• 18:18
  SPEAKER_00: And
• 18:20
  SPEAKER_00: We Are Brave Together was a name that we dreamed up because we just believe in the
• 18:25
  SPEAKER_00: collective power of being together.
• 18:28
  SPEAKER_00: I am more brave when I'm in the presence of someone else who is brave.
• 18:31
  SPEAKER_00: And it takes a lot of bravery and courage to be a caregiving mom.
• 18:35
  SPEAKER_00: So we knew the name and we just started dreaming about serving moms who were caregivers.
• 18:43
  SPEAKER_00: And so we just kind of went from there.
• 18:44
  SPEAKER_00: She actually went to grad school and went back to work full time and said,
• 18:47
  SPEAKER_00: I cannot be your co-founder,
• 18:48
  SPEAKER_00: but yes,
• 18:49
  SPEAKER_00: you can do this.
• 18:50
  SPEAKER_00: Yes, you will do this.
• 18:51
  SPEAKER_00: Yes, you must do this.
• 18:53
  SPEAKER_00: And encouraged me and supported me.
• 18:54
  SPEAKER_00: My husband was in full support as well of starting We Are Brave Together.
• 18:58
  SPEAKER_01: Were you nervous at the time?
• 19:01
  SPEAKER_00: Yes, because I've never done anything like that.
• 19:04
  SPEAKER_00: We launched in 2017.
• 19:05
  SPEAKER_00: So I'd been a mom for almost 17 years.
• 19:08
  SPEAKER_00: I did some early consulting,
• 19:10
  SPEAKER_00: I think,
• 19:11
  SPEAKER_00: when Luke was a baby,
• 19:12
  SPEAKER_00: when I had worked in clinical trials before kids,
• 19:15
  SPEAKER_00: like a few months,
• 19:16
  SPEAKER_00: maybe six months.
• 19:17
  SPEAKER_00: And then I sold clothing through Cabi, which is a wonderful organization, for two years, four seasons.
• 19:24
  SPEAKER_00: And that was also, that definitely, that whole experience also prepared me
• 19:29
  SPEAKER_00: because I had to be in front of people.
• 19:30
  SPEAKER_00: I had to do presentations.
• 19:31
  SPEAKER_00: I had to shamelessly ask people to, will you host, you know, in your home, this little shopping party.
• 19:38
  SPEAKER_00: And it gave me so much confidence.
• 19:40
  SPEAKER_00: It gave me so many great experiences going into We Are Brave.
• 19:44
  SPEAKER_00: But I had never been a business owner or a leader before.
• 19:49
  SPEAKER_00: I wasn't the kid who, you know, tried to be class president growing up.
• 19:52
  SPEAKER_00: You know,
• 19:53
  SPEAKER_00: I just,
• 19:53
  SPEAKER_00: it was new to me,
• 19:54
  SPEAKER_00: but I was,
• 19:55
  SPEAKER_00: and I was scared and I didn't know what I was doing,
• 19:58
  SPEAKER_00: but I was compelled because of my passion and my burning,
• 20:03
  SPEAKER_00: you know,
• 20:03
  SPEAKER_00: that saying like calling is where passion and burdens collide.
• 20:07
  SPEAKER_00: That was it.
• 20:07
  SPEAKER_00: I mean, I had such a heart for moms and special needs families.
• 20:11
  SPEAKER_00: And I was so passionate about the friendship of women and connection and community that
• 20:16
  SPEAKER_00: I had to do something.
• 20:18
  SPEAKER_00: So it's been such a learning journey,
• 20:20
  SPEAKER_00: but I've had incredible people around me supporting me who were experienced leaders,
• 20:25
  SPEAKER_00: experienced in the nonprofit world and sitting on boards who are a part of my team.
• 20:31
  SPEAKER_00: So there are times when things paralyze me,
• 20:34
  SPEAKER_00: certain new ideas or dreams,
• 20:36
  SPEAKER_00: and then you find people to co-execute with you and then it gets a little bit less scary.
• 20:41
  SPEAKER_01: What were you most scared about not knowing when you started?
• 20:45
  SPEAKER_00: Just the how, like, how do you create a website?
• 20:49
  SPEAKER_00: How do you start a nonprofit organization?
• 20:52
  SPEAKER_00: How do you fundraise?
• 20:54
  SPEAKER_00: Just how, how do you do all the tech, the tech side of all that's involved?
• 20:59
  SPEAKER_00: That scared me.
• 21:01
  SPEAKER_00: All the unknowns.
• 21:03
  SPEAKER_00: of how to execute what I wanted to do.
• 21:07
  SPEAKER_01: I feel like at least half of the new,
• 21:12
  SPEAKER_01: certainly women business owners who are listening to this are nodding along because
• 21:16
  SPEAKER_01: for so many of us,
• 21:17
  SPEAKER_01: our dreams are stopped by,
• 21:20
  SPEAKER_01: but I don't know.
• 21:21
  SPEAKER_00: Yes.
• 21:22
  SPEAKER_01: And I hear in your story, an answer that we all have access to, which is ask someone who knows.
• 21:29
  SPEAKER_00: Yes.
• 21:30
  SPEAKER_00: And you can pretty much Google it, everything.
• 21:33
  SPEAKER_00: Yeah.
• 21:33
  SPEAKER_00: You really, really can.
• 21:35
  SPEAKER_01: Yeah, that someone may be Google.
• 21:37
  SPEAKER_00: Yeah, I mean, you can.
• 21:38
  SPEAKER_00: But really what tipped me over,
• 21:40
  SPEAKER_00: because I was paralyzed when I had a few key people say,
• 21:44
  SPEAKER_00: you need to make this a nonprofit.
• 21:47
  SPEAKER_00: Don't go underneath the umbrella of another nonprofit.
• 21:50
  SPEAKER_00: which that's what I wanted to do because that felt safe.
• 21:52
  SPEAKER_00: It felt less scary.
• 21:53
  SPEAKER_00: It felt like I had help.
• 21:55
  SPEAKER_00: And they said to me,
• 21:56
  SPEAKER_00: you're going to do just as much work,
• 21:58
  SPEAKER_00: whether you're underneath their umbrella and they take a cut of your fundraising,
• 22:02
  SPEAKER_00: or if you do your own nonprofit,
• 22:05
  SPEAKER_00: you need to do your own nonprofit.
• 22:07
  SPEAKER_00: But the how, thankfully I had two key people say, I will be your secretary.
• 22:12
  SPEAKER_00: I will be your treasurer.
• 22:14
  SPEAKER_00: Let's go.
• 22:15
  SPEAKER_00: That's all you need to get started.
• 22:16
  SPEAKER_00: It's so true.
• 22:18
  SPEAKER_01: And whether it's a for-profit or a non-for-profit,
• 22:20
  SPEAKER_01: I think we just need a couple of people who are like,
• 22:23
  SPEAKER_01: I trust you to figure this out.
• 22:25
  SPEAKER_01: I believe in your mission and it's going to be okay.
• 22:29
  SPEAKER_00: Yeah.
• 22:30
  SPEAKER_00: I had a friend,
• 22:31
  SPEAKER_00: one of the two that started off as a founding board member before we even were fundraising,
• 22:37
  SPEAKER_00: said,
• 22:37
  SPEAKER_00: here's a check for $1,000.
• 22:38
  SPEAKER_00: What do you need it for?
• 22:40
  SPEAKER_00: And I said, we have to have a website.
• 22:42
  SPEAKER_00: We can't start this without a website.
• 22:44
  SPEAKER_00: We launched with a logo,
• 22:45
  SPEAKER_00: a business card,
• 22:47
  SPEAKER_00: and an Excel spreadsheet of 100 names and a lot of passion for our mission.
• 22:52
  SPEAKER_00: And then we got a website several months later.
• 22:55
  SPEAKER_00: And then we got our nonprofit status several months later.
• 22:59
  SPEAKER_00: And then we were rocking and rolling.
• 23:01
  SPEAKER_00: Thankfully, my husband funded us until we got our nonprofit status and could start fundraising.
• 23:07
  SPEAKER_00: So again, kudos to the amazing husband.
• 23:09
  SPEAKER_01: Kudos to the amazing husband,
• 23:11
  SPEAKER_01: to the community,
• 23:13
  SPEAKER_01: to using your resources,
• 23:15
  SPEAKER_01: to trusting that you didn't have to have all the answers in order to get started.
• 23:19
  SPEAKER_01: Yes.
• 23:20
  SPEAKER_01: By using what you did have and saying, okay, this will be our beginning.
• 23:23
  SPEAKER_01: Right.
• 23:24
  SPEAKER_01: We get so hung up on needing to have everything figured out.
• 23:28
  SPEAKER_00: Right.
• 23:28
  SPEAKER_00: And that was me.
• 23:29
  SPEAKER_00: I'm a recovering perfectionist.
• 23:31
  SPEAKER_01: So I... Welcome to the club.
• 23:33
  SPEAKER_00: There are many of us here at Uplifters.
• 23:36
  SPEAKER_01: Yes, yes, yes.
• 23:38
  SPEAKER_01: We welcome you.
• 23:39
  Thank you.
• 23:40
  SPEAKER_00: Thank you.
• 23:40
  SPEAKER_00: I'm not alone.
• 23:41
  SPEAKER_00: Yeah.
• 23:41
  SPEAKER_00: So that will rear its head from time to time when...
• 23:45
  SPEAKER_00: it's time for a new project or a new take on a project or a new take on a
• 23:49
  SPEAKER_00: fundraiser or something,
• 23:50
  SPEAKER_00: then I'm like,
• 23:51
  SPEAKER_00: but it has to be perfect.
• 23:52
  SPEAKER_00: And I need to understand all the nuts and bolts right now.
• 23:54
  SPEAKER_00: And all the nuts and bolts have to be perfect.
• 23:56
  SPEAKER_00: And all my ducks have to be in a row.
• 23:58
  SPEAKER_00: You just have to start and you have to have the right people around you that
• 24:01
  SPEAKER_00: believe in your vision and believe in your ability to grow as a leader.
• 24:05
  SPEAKER_01: And believe that making mistakes is part of the process.
• 24:09
  SPEAKER_00: Yes.
• 24:10
  SPEAKER_00: And also know that your mission is solid.
• 24:14
  SPEAKER_00: Yeah.
• 24:15
  SPEAKER_00: And that it is a mission worth fighting for and shamelessly asking for money for.
• 24:21
  SPEAKER_01: Yeah.
• 24:22
  SPEAKER_01: I mean, I don't have a nonprofit.
• 24:24
  SPEAKER_01: I have a mission.
• 24:26
  SPEAKER_01: Yes.
• 24:27
  SPEAKER_01: And so I ask people to engage with the mission because I believe the support is
• 24:34
  SPEAKER_01: needed and the community is invaluably beneficial to all of us.
• 24:41
  SPEAKER_01: Yes.
• 24:42
  SPEAKER_01: And I think it comes from this place of authentic belief.
• 24:48
  SPEAKER_01: And that's what allows us to authentically seek support and provide service.
• 24:54
  SPEAKER_00: Yes.
• 24:55
  SPEAKER_00: And people can see authenticity and it is a catalyst for others to support what you're doing.
• 25:02
  Yeah.
• 25:02
  SPEAKER_01: And hopefully for them to do what they need to do.
• 25:05
  SPEAKER_01: And so part of what you've done here, I think, is create...
• 25:09
  SPEAKER_01: a space for other women to find purpose and impact in sharing their stories.
• 25:14
  SPEAKER_01: So talk to me about this anthology that you've created.
• 25:17
  SPEAKER_00: I love elevating women.
• 25:20
  SPEAKER_00: I love supporting other women.
• 25:22
  SPEAKER_00: Obviously, this is why I started We Are Brave Together.
• 25:25
  SPEAKER_00: I am passionate about doing that.
• 25:27
  SPEAKER_00: What better way to give validation to these women as writers?
• 25:34
  SPEAKER_00: What better way to give validation to their heroic,
• 25:37
  SPEAKER_00: extraordinary,
• 25:38
  SPEAKER_00: extreme caregiving,
• 25:39
  SPEAKER_00: but to put it in a book for the world to see?
• 25:43
  SPEAKER_00: Because when you're the only person in somebody's world,
• 25:47
  SPEAKER_00: like if you're you sharing with your family and your friends,
• 25:50
  SPEAKER_00: let's say you're the only one in those communities,
• 25:53
  SPEAKER_00: whether it's your family or your group of friends that has a child with a disability,
• 25:58
  SPEAKER_00: your people around you hear one story.
• 26:00
  SPEAKER_00: And it can be easy to minimize how extreme and extraordinary it is.
• 26:05
  SPEAKER_00: But to read 22 stories and
• 26:08
  SPEAKER_00: and you see the through line,
• 26:10
  SPEAKER_00: you see the fierce love and the fierce advocacy and the exhaustion,
• 26:14
  SPEAKER_00: the isolation,
• 26:15
  SPEAKER_00: the compassion fatigue,
• 26:16
  SPEAKER_00: the burnout,
• 26:17
  SPEAKER_00: then your heart and your mind opens to the whole world,
• 26:22
  SPEAKER_00: hopefully,
• 26:24
  SPEAKER_00: of disability and medical complexity and mental illness.
• 26:28
  SPEAKER_00: And so I wanted to give writers who don't think they're writers an opportunity to share their story.
• 26:36
  SPEAKER_00: I wanted to raise awareness about caregiving and caregivers because in our culture
• 26:42
  SPEAKER_00: in the United States,
• 26:43
  SPEAKER_00: we do not value caregivers and caregiving.
• 26:45
  SPEAKER_00: There's 60 million unpaid caregivers in our country.
• 26:49
  SPEAKER_00: Yeah,
• 26:49
  SPEAKER_00: we're saving the country billions and billions of dollars or we're saving somebody
• 26:53
  SPEAKER_00: billions and billions of dollars by taking it on and being unpaid.
• 26:58
  SPEAKER_00: Some states do pay caregiving moms or parents or caregivers, but most do not.
• 27:03
  SPEAKER_00: And it should be nationwide.
• 27:05
  SPEAKER_00: It should be in every country, but I won't get on my soapbox there.
• 27:09
  SPEAKER_01: It's a soapbox worth getting on.
• 27:10
  SPEAKER_00: Okay, thank you.
• 27:11
  SPEAKER_00: Thank you.
• 27:12
  SPEAKER_01: And I will join you up there.
• 27:13
  SPEAKER_01: Yes.
• 27:14
  SPEAKER_01: Thank you.
• 27:14
  SPEAKER_01: Thank you.
• 27:14
  SPEAKER_01: Thank you.
• 27:15
  SPEAKER_01: And there is a lot of legislation work to be done.
• 27:18
  SPEAKER_00: Yes.
• 27:19
  SPEAKER_00: And that is definitely something I hope that We Are Brave can get into is more
• 27:22
  SPEAKER_00: advocacy and activism and making those lasting changes.
• 27:27
  SPEAKER_00: Because what we're doing is we're offering a little bit of rescue, right?
• 27:31
  SPEAKER_00: And a little bit of help and resources, but it's not going to be enough.
• 27:35
  SPEAKER_00: Mm-hmm.
• 27:35
  SPEAKER_00: It's not going to be enough to teach moms how to truly engage in true self-care.
• 27:40
  SPEAKER_00: It's not going to be enough to give them a weekend off.
• 27:42
  SPEAKER_00: It's not going to be enough to give them an inspirational podcast on a weekly basis.
• 27:46
  SPEAKER_00: That's not enough.
• 27:47
  SPEAKER_00: That will all help.
• 27:48
  SPEAKER_01: But it's not going to fix it.
• 27:50
  SPEAKER_00: But we have to change systems in order for parents not to burn out or all caregivers,
• 27:56
  SPEAKER_00: let's just say,
• 27:57
  SPEAKER_00: not to burn out.
• 27:57
  SPEAKER_00: We have to change the system.
• 27:59
  SPEAKER_00: So maybe this book...
• 28:01
  SPEAKER_00: will motivate people to change policies, to write new laws.
• 28:06
  SPEAKER_00: Yeah, so I hope for this book that it validates every caregiving mom.
• 28:12
  SPEAKER_00: I hope they feel seen and heard and understood, but they choked up.
• 28:16
  SPEAKER_00: By reading other people's stories and going, oh, that's me.
• 28:20
  SPEAKER_00: That's me.
• 28:21
  SPEAKER_00: I see myself in this book.
• 28:22
  SPEAKER_00: So that is my hope.
• 28:25
  SPEAKER_00: My hope is that caregiving moms will buy the book and then they'll buy more books
• 28:30
  SPEAKER_00: for their friends and family because it will validate them when their friends and
• 28:34
  SPEAKER_00: family see 22 stories.
• 28:36
  SPEAKER_00: And I certainly hope that this will move anybody into action to change things for caregivers.
• 28:43
  SPEAKER_01: Is there a story in the anthology that especially stands out to you?
• 28:46
  SPEAKER_00: One of our writers, Claire McMurray, the title of her story is Behind the Windows.
• 28:53
  SPEAKER_00: And I feel like that is such a metaphor for moms in the caregiving role because
• 28:59
  SPEAKER_00: there's so much that we are isolated from that we're watching.
• 29:03
  SPEAKER_00: We're watching the world go by,
• 29:05
  SPEAKER_00: but we're tucked inside because it's safer,
• 29:08
  SPEAKER_00: because it's safer for our child,
• 29:10
  SPEAKER_00: because it's safer for us,
• 29:12
  SPEAKER_00: depending on what happens when you're out in the community,
• 29:15
  SPEAKER_00: because people don't understand,
• 29:16
  SPEAKER_00: because friends don't understand,
• 29:18
  SPEAKER_00: just strangers don't understand,
• 29:20
  SPEAKER_00: you know?
• 29:20
  SPEAKER_00: And so there's an isolation and a loneliness that we live unless we are actively pursuing community.
• 29:30
  SPEAKER_00: Yeah.
• 29:31
  SPEAKER_00: And even having community within the disability or medically complex world,
• 29:36
  SPEAKER_00: you still have to live your life every day.
• 29:39
  SPEAKER_00: And that still feels a little bit lonely.
• 29:44
  SPEAKER_00: And you sometimes just feel like you're watching the world go by.
• 29:48
  SPEAKER_00: Yeah.
• 29:50
  SPEAKER_01: What a powerful image too.
• 29:53
  SPEAKER_01: And to me,
• 29:55
  SPEAKER_01: it is a call to action to reach out to the people in my life who may be feeling
• 30:01
  SPEAKER_01: isolated or set apart and extend that hand.
• 30:07
  SPEAKER_01: So many folks in our audience are caregivers,
• 30:11
  SPEAKER_01: whether they are caregiving for their elders,
• 30:14
  SPEAKER_01: for their children,
• 30:16
  SPEAKER_01: for partners.
• 30:17
  SPEAKER_01: It is a place where uplifters step in to say, I will be the caregiver.
• 30:24
  SPEAKER_01: I will take care.
• 30:25
  SPEAKER_01: I will carry these burdens.
• 30:28
  SPEAKER_01: And I think for so many of us, we end up with the Louisa complex, right?
• 30:33
  SPEAKER_01: where we are carrying it all alone and it can get very heavy,
• 30:38
  SPEAKER_01: especially without the necessary supports,
• 30:41
  SPEAKER_01: be it community or even professional supports to help just sort of hold it for a
• 30:48
  SPEAKER_01: little while.
• 30:49
  SPEAKER_01: Yes.
• 30:49
  SPEAKER_00: Yeah.
• 30:51
  SPEAKER_00: Yes.
• 30:51
  SPEAKER_00: And it's hard to ask for help to hold it, but we have to.
• 30:57
  SPEAKER_00: We have to ask for help because it's not often going to come to us where someone
• 31:03
  SPEAKER_00: out of the blue says,
• 31:04
  SPEAKER_00: hey,
• 31:04
  SPEAKER_00: I'd like to bring you a dinner every Monday night.
• 31:07
  SPEAKER_00: Nobody knows what we need.
• 31:09
  SPEAKER_00: Nobody knows what we need.
• 31:10
  SPEAKER_00: So, you know, I learned this in family therapy that parents are not mind readers.
• 31:18
  SPEAKER_00: Kids are not mind readers.
• 31:19
  SPEAKER_00: Therefore, friends are not mind readers.
• 31:21
  SPEAKER_00: You know, you figure that out early, hopefully in marriage.
• 31:24
  SPEAKER_00: Oh,
• 31:25
  SPEAKER_00: I have to ask for what I want and need because my partner is not going to know
• 31:29
  SPEAKER_00: unless I ask specifically and explicitly.
• 31:31
  SPEAKER_00: I need a break Friday night for three hours.
• 31:35
  SPEAKER_00: I need to go to a cafe and be by myself.
• 31:38
  SPEAKER_00: Chances of your spouse saying,
• 31:40
  SPEAKER_00: hey,
• 31:40
  SPEAKER_00: I'd like to give you Friday night to just go sit in a cafe by yourself with your
• 31:44
  SPEAKER_00: journal and your favorite book.
• 31:45
  SPEAKER_00: Some to none.
• 31:47
  SPEAKER_00: Yeah, some to none.
• 31:48
  SPEAKER_00: Because you have to tell them.
• 31:50
  SPEAKER_00: It's the same with what we need as humans.
• 31:53
  SPEAKER_00: We have to tell people.
• 31:54
  SPEAKER_00: We have to ask for help.
• 31:55
  SPEAKER_00: But we live in a culture that goes against that, that says that that's somehow weak.
• 32:00
  SPEAKER_00: We've been indoctrinated to we have to do it all ourselves.
• 32:03
  SPEAKER_00: Well, that is such...
• 32:04
  SPEAKER_00: BS.
• 32:04
  SPEAKER_00: It's not true.
• 32:06
  SPEAKER_00: And it only kills us mentally, emotionally, relationally.
• 32:10
  SPEAKER_00: And we just have to not be afraid to say, this is what I need.
• 32:14
  SPEAKER_00: Yeah.
• 32:15
  SPEAKER_01: And to ask ourselves what we need, right?
• 32:18
  SPEAKER_01: It's so easy for us to get out of touch with our own needs.
• 32:20
  SPEAKER_01: And so you talk about meditation and journaling.
• 32:24
  SPEAKER_01: I often figure it out through talking to other people and I got to know my symptoms and
• 32:29
  SPEAKER_01: Like, oh, I made up some like grumpy story about that woman in the gym today.
• 32:35
  SPEAKER_01: What's up with me?
• 32:36
  SPEAKER_01: I would not normally do that, right?
• 32:38
  SPEAKER_00: Right.
• 32:38
  SPEAKER_01: Those little moments where we're like out of integrity with ourselves.
• 32:42
  SPEAKER_01: Yes.
• 32:42
  SPEAKER_01: It's like getting curious about those.
• 32:45
  SPEAKER_01: And if you're a verbal processor,
• 32:46
  SPEAKER_01: like me talking it out to somebody,
• 32:48
  SPEAKER_01: if you're a written processor,
• 32:50
  SPEAKER_01: writing it out.
• 32:51
  SPEAKER_01: But yes, that's really the first step, isn't it?
• 32:55
  SPEAKER_01: And then the courage to ask.
• 32:57
  SPEAKER_00: Yes, for sure.
• 32:58
  SPEAKER_00: And you by asking for help is giving other people the opportunity to be an uplifter.
• 33:07
  SPEAKER_00: So well said, Jessica.
• 33:09
  SPEAKER_00: Yes.
• 33:10
  SPEAKER_00: When we fundraise, we are giving people the opportunity to be generous.
• 33:16
  SPEAKER_00: When you're asking somebody to be helpful in whatever way,
• 33:19
  SPEAKER_00: like,
• 33:20
  SPEAKER_00: could you be the person that just picks up the prescriptions for me?
• 33:22
  SPEAKER_00: That's one task that would be incredibly helpful.
• 33:26
  SPEAKER_00: I'm not asking you to babysit my kid.
• 33:29
  SPEAKER_00: I'm not asking you to figure out how to work a G-tube.
• 33:32
  SPEAKER_00: I'm just asking for you to pick up the medications once a week.
• 33:37
  SPEAKER_00: You're giving that person an opportunity to be an uplifter in your life.
• 33:41
  SPEAKER_00: And how good are they going to feel like, I get to do this?
• 33:44
  SPEAKER_00: Yeah.
• 33:45
  SPEAKER_00: But we downplay the beautiful repercussions of asking for help.
• 33:50
  SPEAKER_01: And then we carry it all and then we end up resentful and we end up not our best
• 33:55
  SPEAKER_01: selves and feeling all the guilt and shame and then carry more to deal with the guilt.
• 34:01
  SPEAKER_01: It's a vicious cycle.
• 34:02
  SPEAKER_01: And so it is better for everyone involved to ask for support, first from ourselves and then from others.
• 34:12
  SPEAKER_00: Yes.
• 34:12
  SPEAKER_00: And why can't we just normalize that?
• 34:14
  SPEAKER_00: Yes.
• 34:16
  SPEAKER_00: Why can't we normalize asking for help?
• 34:18
  SPEAKER_00: Yeah.
• 34:18
  SPEAKER_00: Yeah.
• 34:19
  SPEAKER_01: And celebrate how good it feels to be seen, to be cared for, and to give and to care.
• 34:28
  SPEAKER_01: Oh, Jessica, I'm so glad you exist in the world.
• 34:31
  SPEAKER_01: Thank you.
• 34:32
  SPEAKER_01: Will you tell my kids?
• 34:33
  SPEAKER_00: I will.
• 34:34
  SPEAKER_01: I have a feeling they understand that.
• 34:38
  SPEAKER_01: Well, they see it all, right?
• 34:39
  SPEAKER_01: Yeah.
• 34:40
  SPEAKER_01: That's important too.
• 34:43
  SPEAKER_01: I think it's important for our kids to know we're human beings and not automaton
• 34:48
  SPEAKER_01: machines who are just there to serve,
• 34:50
  SPEAKER_01: right?
• 34:50
  SPEAKER_01: Like this is a human being.
• 34:52
  SPEAKER_01: I'm so excited to read more of Brave Together.
• 34:56
  SPEAKER_01: And I hope that our Uplifter community will read it as well and see themselves in
• 35:03
  SPEAKER_01: these stories and those they love in these stories and find greater compassion and understanding.
• 35:09
  SPEAKER_01: As you say,
• 35:10
  SPEAKER_01: we can all just hold hands and collectively normalize asking for help,
• 35:17
  SPEAKER_01: normalize making mistakes,
• 35:19
  SPEAKER_01: normalize...
• 35:21
  SPEAKER_01: allowing ourselves to be seen.
• 35:23
  SPEAKER_01: Yes, yes, yes.
• 35:24
  SPEAKER_01: Thank you.
• 35:25
  SPEAKER_01: Thank you for listening to the Uplifters podcast.
• 35:29
  SPEAKER_01: If you're getting a boost from these episodes,
• 35:32
  SPEAKER_01: please share them with the Uplifters in your life and then join us in conversation
• 35:38
  SPEAKER_01: over at theuplifterspodcast.com.
• 35:41
  SPEAKER_01: Head over to Spotify,
• 35:43
  SPEAKER_01: Apple Podcasts,
• 35:44
  SPEAKER_01: or wherever you get your podcasts and like,
• 35:47
  SPEAKER_01: follow,
• 35:48
  SPEAKER_01: and rate our show.
• 35:49
  SPEAKER_01: It'll really help us connect with more uplifters and it'll ensure you never miss
• 35:55
  SPEAKER_01: one of these beautiful stories.
• 35:59
  SPEAKER_02: Big love.
• 36:01
  SPEAKER_02: Painted water, sunshine, with rosemary and thyme.
• 36:06
  SPEAKER_02: Dwell in love perplexing, though you find it vexing.
• 36:10
  SPEAKER_02: Toss a star and hover, be your own best lover.
• 36:15
  SPEAKER_02: Relish in a new prime, plant a tree in springtime.
• 36:19
  SPEAKER_02: Dance with idle hindsight, bring the sun to twilight.
• 36:25
  SPEAKER_02: Lift you up, whoa!
• 36:29
  SPEAKER_02: Lift you up.
• 36:30
  SPEAKER_02: Lift you up.
• 36:31
  SPEAKER_02: Lift you up.
• 36:59
  SPEAKER_02: Beautiful.
• 37:01
  SPEAKER_02: I cried.
• 37:03
  SPEAKER_02: It's that little thing you did with your voice.
• 37:12
  SPEAKER_02: Right, in the pre-chorus, right?
• 37:17
  SPEAKER_02: I was like... Mommy, stop crying.
• 37:19
  SPEAKER_00: You're disturbing the peace.