Speaker 1: Welcome to the Good Stuff. I'm Jacob Shick and I'm
Speaker 1: joined by my co host and wife, Ashley Shick.
Speaker 2: Jake is a third generation combat Marine and I'm a
Speaker 2: gold starred granddaughter. We work together to serve military veterans,
Speaker 2: first responders, frontline healthcare workers, and their families with mental
Speaker 2: and emotional wellness through traditional and non traditional therapy.
Speaker 3: At One Tribe Foundation.
Speaker 1: We believe everyone has a story to tell, not only
Speaker 1: about the peaks, but also the valleys they've been through
Speaker 1: to get them to where they are today.
Speaker 2: Each week, we invite a guest to tell us their story,
Speaker 2: to share with us the lessons they've learned that shaped
Speaker 2: who they are and what they're doing to pay it
Speaker 2: forward and give back.
Speaker 1: Our mission with this show is to dig deep into
Speaker 1: our guest's journeys so that we can celebrate the hope
Speaker 1: and inspiration their story has to offer.
Speaker 3: We're thrilled you're joining us again.
Speaker 1: Welcome to the Good Stuff.
Speaker 2: Our guest today is Maya Scott. Her story is about
Speaker 2: young love, pregnancy, parenthood, and the unthinkable.
Speaker 1: Maya's daughter Mariy, was diagnosed with spinal muscular atrophy at
Speaker 1: six months old and passed away shortly after turning three.
Speaker 1: Mary's life was full of joy, love and hardships, and
Speaker 1: we are so lucky to have Maya on the show
Speaker 1: today to give us a glimpse of the glory that
Speaker 1: was and is Mariy.
Speaker 3: After Marie passed, Maya found herself driven to help families
Speaker 3: like hers, and today she is the director of the
Speaker 3: Center for Diversity and Health Equity at Seattle Children's Hospital.
Speaker 3: Her husband Jamie achieved his lifelong dream of becoming a firefighter,
Speaker 3: serving the neighborhood he grew up in. Facing a mother
Speaker 3: and father's worst nightmare, these two found beauty in life
Speaker 3: through Mari's enduring spirit, which has led them to travel
Speaker 3: the world and take care of their community.
Speaker 1: This is a miraculous conversation about love, strength, and living
Speaker 1: life to the fullest.
Speaker 2: Maya Scott, we can't thank you enough for joining us
Speaker 2: to tell us your story and the story of your
Speaker 2: beautiful daughter, Mari. We know that you and your husband
Speaker 2: Jamie live your lives in honor and celebration of Mari's
Speaker 2: three beautiful years on this earth, and it is such
Speaker 2: a privilege to have you on the show to spread
Speaker 2: her spirit.
Speaker 4: That's exactly why right. Every single time I have an
Speaker 4: opportunity to talk about just the really robust and incredible
Speaker 4: way that she lived her life, feels like a really
Speaker 4: small ask to share that, because I think there's so
Speaker 4: many things that people need to hear just about the
Speaker 4: way that she taught all of us. So I'm grateful
Speaker 4: for the opportunity to share a little bit more about
Speaker 4: her in the space.
Speaker 1: We're eternally grateful to you and your courage for doing this,
Speaker 1: and so look to get us started. First things first,
Speaker 1: how did you and Jamie meet.
Speaker 4: We met in high school. We were high school sweethearts,
Speaker 4: and we had health class together, which is kind of
Speaker 4: funny if you know what you learn in health class.
Speaker 4: And we were assigned a group project in class, and
Speaker 4: for some reason, like he scooted his chair all the
Speaker 4: way across the room so that he could be in
Speaker 4: my group, which should have been a sign. And the
Speaker 4: rest was history. We fell in love and I went
Speaker 4: home and told my mom like after I met him,
Speaker 4: that I met the guy I'm going to marry today,
Speaker 4: and I was like fifteen years old, and my mom
Speaker 4: was like sure, like everybody says that. And then at
Speaker 4: my wedding, I got to be really smug and rude
Speaker 4: about it because we got married. So yeah, it was great.
Speaker 4: You're like I told you so, Yep, exactly, that's exactly
Speaker 4: what I said.
Speaker 3: I'm thinking back to high school.
Speaker 2: Did he throw any really great, you know, pickup line
Speaker 2: down or anything, or he just I mean.
Speaker 3: Yeah, he scooted his chair all the way over to you.
Speaker 1: Or did he just completely invade your personal.
Speaker 4: Space a combination.
Speaker 2: He didn't.
Speaker 4: He wasn't like, you know, dropping pickup lines and stuff.
Speaker 4: But after we started dating, like, he still had a
Speaker 4: paper route. It was that deep in back in time,
Speaker 4: and he used his paper route money to bring me
Speaker 4: roses to school on our month anniversary every single month,
Speaker 4: and so it wasn't a pickup line, but it was
Speaker 4: game right. I was like, the paper route money to
Speaker 4: buy the roses to bring to school felt like an
Speaker 4: extreme flex when you were fifteen years old. It was
Speaker 4: very romantic that.
Speaker 2: Yeah.
Speaker 1: I mean to the ladies on this, I'm thinking to myself, like,
Speaker 1: come on, Jamie, like you're making the rest of us
Speaker 1: look horrible.
Speaker 2: That's amazing and okay, so high school, sweetheart, and then
Speaker 2: you did you wound up and got hitched.
Speaker 4: Yeah, so we got married super young. We got married
Speaker 4: when we were twenty, and I tell people like, of course,
Speaker 4: we have this wonderful love story, but it's also like
Speaker 4: the dumbest thing I ever did. I don't know if
Speaker 4: both things can be true at the same time. But
Speaker 4: I don't recommend children to get married when they're twenty,
Speaker 4: but here we are. Yes, we got married when we
Speaker 4: were twenty and had a very small wedding which is
Speaker 4: our family, and then a big reception with our massive
Speaker 4: families back at home, and then like a month later,
Speaker 4: we moved to Hawaii to start the rest of our lives.
Speaker 4: And it was just a blast, I mean, to be newlyweds,
Speaker 4: and I did my undergrad at University of Hawaii, and
Speaker 4: I think it was just the perfect beginning, just to
Speaker 4: get away from you know, all of the we were
Speaker 4: kids in Seattle, and Seattle can be real small towny.
Speaker 4: To start in a new place like Hawaii, it was
Speaker 4: just it was magic. That was the best decision we
Speaker 4: ever made.
Speaker 1: Had you been to Hawaii before.
Speaker 4: You know, my grandma was a genius and when she retired,
Speaker 4: she lived in the Seattle winters in Honolulu and lived
Speaker 4: like spring and summer here, so they call them snowbirds.
Speaker 4: And so I had gone over back and forth when
Speaker 4: I was like a little kid to see my grandma.
Speaker 4: We would spend Christmas there every once in a while.
Speaker 4: And there's a great deal, like we paid in state
Speaker 4: tuition if you live on the West Coast. And so
Speaker 4: I was not a super smart student back in the day.
Speaker 4: I just didn't care that much about school. I guess
Speaker 4: I was too busy, you know, being in love with
Speaker 4: my high school boyfriend or something. But I could like
Speaker 4: move to eastern Washington and go to college or move
Speaker 4: to Hawaii, and so I chose Hawaii. So I'm a, yeah,
Speaker 4: I'm a I love being near the water's brilliant.
Speaker 1: You're gonna have to be our tour guide. Yeah, that's
Speaker 1: our fiftieth state.
Speaker 2: We know you love to travel, and we love to travel,
Speaker 2: and we've done a lot of it for work, but
Speaker 2: we do a lot of it for pleasure.
Speaker 3: And I've been to forty nine of the fifty states.
Speaker 2: Jake's been to forty eight of the fifty states, and
Speaker 2: he still lacks Alaska, and neither of us have been
Speaker 2: to Hawaii.
Speaker 3: So we're that's going to be our fiftieth.
Speaker 4: Oh my gosh, okay, way to like bring it home though,
Speaker 4: like right, I mean the well done, Yes this is
Speaker 4: I know this is not that podcast, but I can.
Speaker 4: I'll send you a whole, like aggressively long list of
Speaker 4: things to do in places to go.
Speaker 2: It's beautifect Well, we're just going to talk you into
Speaker 2: coming with us.
Speaker 4: Yeah, I don't need to be talked into it. I don't.
Speaker 4: I don't listen in.
Speaker 1: So it's done. It's done. You just got to figure
Speaker 1: out when we're going to squeeze a laskin.
Speaker 2: So married at twenty and then when did y'all decide
Speaker 2: to grow your family.
Speaker 4: I think we were twenty five when we decided to
Speaker 4: have a baby. And again, right, we're kind of West
Speaker 4: Coast folks, and that feels so young now that I
Speaker 4: think about it, But I think because we've been together
Speaker 4: for so long, it just didn't feel it didn't feel wilder,
Speaker 4: you know, silly to have a kid. And so we were,
Speaker 4: you know, I think, as prepared as you can be,
Speaker 4: but like, you know, kind of poor. We were living
Speaker 4: in the Bay Area, just kind of living the lives
Speaker 4: of like people in our mid twenties in Oakland, California,
Speaker 4: and just decided to have a baby, and I had
Speaker 4: the best pregnancy and all these friends that didn't have
Speaker 4: any kids, and so we just like I had this
Speaker 4: whole crew of folks that just went on food adventures
Speaker 4: with me and ate all the fun things that I
Speaker 4: wanted to eat, and it wasn't really I felt so
Speaker 4: energized and excited when we were preparing for Mari to come.
Speaker 4: It was like such a special time waiting to meet her.
Speaker 4: And so I remember it's all intertwined in, you know,
Speaker 4: being twenty five, living in the Bay Area, having these
Speaker 4: fantastic friends, just kind of waiting for this little person
Speaker 4: to come join our crew.
Speaker 2: And it's so funny because parents always say that, oh,
Speaker 2: we're waiting for the right time to have It's never
Speaker 2: the right time, right.
Speaker 3: What were y'all doing professionally at that time?
Speaker 4: So I had a really cool job at the time.
Speaker 4: I was working for a small nonprofit adoption agency, which
Speaker 4: was like my first big kid job out of college.
Speaker 4: And I got to help look for families adoptive families
Speaker 4: for kids in foster care for the state of California.
Speaker 4: And I've adopted from foster care, and so it was
Speaker 4: super meaningful and full circle. And Jamie was working for
Speaker 4: like the Duty Free company, so that was his job
Speaker 4: in Hawaii, and transferred to San Francisco and was like
Speaker 4: a you know, liquor and wine manager, and you know,
Speaker 4: they weren't like our forever jobs, but they were good enough.
Speaker 4: And so we were, you know, just kind of chugging
Speaker 4: along with our jobs and living our best life in
Speaker 4: the Bay Area. I can't stress that enough fun place
Speaker 4: to be when you're young.
Speaker 3: Yeah, no kidding, or when you're old, or pretty much any.
Speaker 4: Time anytime, yeah, anytime.
Speaker 2: Yeah, So this beautiful bundle of joy comes along.
Speaker 3: Tell us about Mari.
Speaker 4: Oh my gosh. She came into the world like with
Speaker 4: such purpose. And you hear when you're pregnant that your
Speaker 4: kids are just going to be who they are. You
Speaker 4: don't really have much control. She came into the world
Speaker 4: with clarity and purpose, even as like a newborn. We
Speaker 4: remember looking at her and being like she's like staring
Speaker 4: us down, like she was just super present in the world,
Speaker 4: and it was so exciting to just get to know her.
Speaker 4: So she came on her own time, right when she
Speaker 4: wanted to. And you know, I stayed at home for
Speaker 4: like twenty two hours and had labored at home, and
Speaker 4: then she came two hours later and she just unfolded
Speaker 4: like a flower and just kind of looked at everybody,
Speaker 4: And I remember that so clearly, just her dark eyes
Speaker 4: just kind of checking us out. I tell this funny
Speaker 4: story because she loved to hear about being born later on,
Speaker 4: so she was super hyped to know how painful it
Speaker 4: was and how like she was, you know, like she
Speaker 4: she wanted me to tell her this story all the time.
Speaker 4: But all of our friends came to the hospital and
Speaker 4: were waiting, and I didn't know it either, And so
Speaker 4: when she was born, there was all these folks that
Speaker 4: were waiting to meet her, and so one after the
Speaker 4: other they came in and helped her and snuggled her.
Speaker 4: And later on in life, when she learned about like
Speaker 4: the Christmas story and like Baby Jesus, she learned about
Speaker 4: it and she said, oh, Baby Jesus was just like me.
Speaker 4: Everybody was waiting to meet Baby Jesus suit just like me.
Speaker 4: And I was like, like, you might have it like
Speaker 4: a little bit backwards, but you know, that's one interpretation
Speaker 4: of the story. But she just was captivating from the
Speaker 4: time that she arrived and I know I'm biased as
Speaker 4: her parent, but she just had a special energy.
Speaker 1: I'm curious to know the name Maury, where did that
Speaker 1: come from?
Speaker 4: So her full name is Marielle, and we called her
Speaker 4: mari for short. My mom's name is Mary Ellen, and
Speaker 4: so it's kind of an interpretation of a few family names.
Speaker 4: But she liked to be called Mariy for short, and
Speaker 4: we nicknamed her that, and then she kind of embraced
Speaker 4: it when she was able to tell people what she
Speaker 4: wanted to be called, which she wasn't shy about.
Speaker 2: She sounds like, I mean, not just a bundle of joy,
Speaker 2: but just like you said, she came in with clarity
Speaker 2: and purpose, just such a presence.
Speaker 4: That's yeahful. She certainly made her presence known even before
Speaker 4: she could talk. She just had a way of kind
Speaker 4: of peering into people's eyes and demanding their attention, even
Speaker 4: when she was just a tiny little thing.
Speaker 3: So how did she develop as she was growing older?
Speaker 4: She was ahead of all of her milestones for a while.
Speaker 4: And you know, you like pretend like that's not exciting,
Speaker 4: but it is. She rolled over really early and we
Speaker 4: were kind of proud of that. And I remember noticing
Speaker 4: one day that she couldn't roll over anymore. She was trying,
Speaker 4: but she couldn't. And you know, I'm a little bit
Speaker 4: of a like a nervous nelly or there's you know,
Speaker 4: a million ways to describe it. I remember just noting
Speaker 4: that and being really freaked out by that, and so
Speaker 4: taking her to her pediatrician, who I think tried not
Speaker 4: to freak us out but wanted to do for their
Speaker 4: workup and have her be seen by a physical therapists.
Speaker 4: It could be a range of like absolutely nothing to
Speaker 4: something horrifying, and so we you know, started on kind
Speaker 4: of a medical process totally unexpectedly, just when we noticed
Speaker 4: that she couldn't do the things that she wanted to
Speaker 4: do anymore. I think I was a little naive even
Speaker 4: going into that, of how scary her future could become.
Speaker 2: I think that's completely natural to be the nervous nelly,
Speaker 2: and especially first time mom.
Speaker 1: From the mall perspective, I think that's a first time
Speaker 1: parent thing. You know. I think you're just like, like
Speaker 1: I told you, like I would fall asleep sleeping at
Speaker 1: the end of the bed when Jackson was you know,
Speaker 1: because he was in the crip thing right at the
Speaker 1: end of the bed. And I would just like just
Speaker 1: watch them breathe and be at the end of the
Speaker 1: bed and then I'd wake up like that, Yeah, I
Speaker 1: think it's normal. There are thing they're ours, you know.
Speaker 1: Just like you said, it's never a perfect time. You
Speaker 1: think you could do everything in the world and think
Speaker 1: that you're like okay, I'm ready, so ready, and then
Speaker 1: that little human being blesses the world and you're like,
Speaker 1: oh my god.
Speaker 4: Yep, yep, everyone's the best parent in the world, like
Speaker 4: before they have children. It's this is a really interesting vibe,
Speaker 4: like you know all, you have, all the answers, you
Speaker 4: know everything, and then you have a kid and you're like, okay,
Speaker 4: I am I am humbled. I know nothing at all.
Speaker 1: Yeah, no doubt about it.
Speaker 2: Throw all the books, all the guides away, let me
Speaker 2: just do this thing. So when the docs started doing
Speaker 2: the research and started running some of the tests, what
Speaker 2: did you discover?
Speaker 4: So we were called into an appointment and met with
Speaker 4: her doctors who told us that she was diagnosed with
Speaker 4: a disease called spinal muscular atrophy and there's kind of
Speaker 4: a range of severity and it's one of those things
Speaker 4: that catching it earlier is the opposite of good. It's terrible.
Speaker 4: The earlier you find it, the more severe it is.
Speaker 4: It's when the symptoms present. I remember bits and pieces
Speaker 4: of the conversation, not that much, just because you know,
Speaker 4: everything kind of goes dark when you're confronted with something horrible.
Speaker 4: I remember him telling us like, there's nothing you can do,
Speaker 4: like take her home and love her because she's not
Speaker 4: going to live a long life. We lived in the
Speaker 4: Bay Area, we didn't have a car, and I remember like,
Speaker 4: instead of taking the bus back to our apartment like
Speaker 4: we always did, my husband and I we walked all
Speaker 4: the way home, just like, you know, kind of breathless,
Speaker 4: because it wasn't only that she had this disease that
Speaker 4: we didn't know anything about, but it was that there
Speaker 4: was no hope that was kind of put in front
Speaker 4: of us when we learned that there wasn't a thing
Speaker 4: that we could do or a medicine that we could take.
Speaker 4: It was just this is going to be awful. She's
Speaker 4: gonna die. There's nothing we can do about it. It
Speaker 4: just took my breath away and it didn't make sense
Speaker 4: because besides not being able to roll over anymore, she
Speaker 4: wasn't sick right. There wasn't like an illness in front
Speaker 4: of us. So she was just this like happy little
Speaker 4: five and a half or six month old baby doing
Speaker 4: what five and a half and six month old babies do.
Speaker 4: There was just this really intense dichotomy between like what
Speaker 4: we heard and what we were looking at, and I
Speaker 4: just it's hard to make sense of those two realities
Speaker 4: at the same time, because you know, kids don't stop, right,
Speaker 4: You got to like get up and do the thing
Speaker 4: the next day. And so it just didn't match up
Speaker 4: to where we were emotionally, which I think in reflection
Speaker 4: was a good thing maybe, but I think it made
Speaker 4: it hard in real time for sure.
Speaker 2: I Mean, I'm sitting here thinking like, how do you
Speaker 2: get this devastating news that you've just received and then
Speaker 2: you have to go on parenting right, acting like nothing's wrong,
Speaker 2: acting like everything's fine.
Speaker 3: How did you cope?
Speaker 4: I'm lucky to be surrounded by a lot of incredible people,
Speaker 4: and so I remember talking to my mom and I
Speaker 4: remember my friends coming over. I think she forced us
Speaker 4: to cope. She was just like the embodiment of joy,
Speaker 4: and so I just in reflection, had this like pit
Speaker 4: in my stomach for the longest time. But I think
Speaker 4: there was a part of me that just tried to
Speaker 4: set aside all the things that were to come, because
Speaker 4: you know, I had to get up, my husband had
Speaker 4: to go to work. I had a baby that wanted
Speaker 4: to engage, and I think demanded that of us. And
Speaker 4: so we really just tried to do the things that
Speaker 4: we were supposed to do, right, take her to story
Speaker 4: time and you know, get outside and read books. And
Speaker 4: I think early on got to a place where we
Speaker 4: were really going to soak in our time with her,
Speaker 4: right that was the easiest thing to come to, was, well,
Speaker 4: if she's gonna die, then we have to love her extra,
Speaker 4: we have to do all the things extra. And so
Speaker 4: we really did that and started celebrating her birthday every
Speaker 4: month instead of every year, just because we wanted to
Speaker 4: have celebrations, right, and she deserved to be celebrated, And
Speaker 4: so we just decided to start doing those things and
Speaker 4: do them all the time, because I think that was
Speaker 4: the only thing that we could control, right, was how
Speaker 4: we lived with her. Everything else was just happening, and
Speaker 4: so we're like, damn it, if everything else is happening
Speaker 4: and we have no control over that, then we're going
Speaker 4: to have some fun right now. And it wasn't easy, right,
Speaker 4: it wasn't perfect all the time, but it was so
Speaker 4: really a mission.
Speaker 1: You and Jamie clearly decided, Hey, let's grab a hold
Speaker 1: of our grit grace. We got to keep putting one
Speaker 1: foot in front of the other because this beautiful, precious
Speaker 1: angel doesn't know about this devastating news. And I think
Speaker 1: the doctor what sound advice? Go love her all the way,
Speaker 1: you know, And then you guys knowing, hey, what can
Speaker 1: we do? Because how much do all of us We
Speaker 1: were just talking about that this week. We forget to
Speaker 1: celebrate the small things like we forget, maybe not even
Speaker 1: so much forget, but it's like, eh, it's just a
Speaker 1: small thing, like we didn't win the lottery, so it's
Speaker 1: not the big of a deal, or like you know
Speaker 1: what I mean. And you guys were intentional about it.
Speaker 1: That had to play a role in having the internal
Speaker 1: fortitude to keep going next step. And I yeah, there's
Speaker 1: no manual on how to do that, Like there's no
Speaker 1: class you can take to give you the perseverance of
Speaker 1: perspective you need to do the loving the best you can.
Speaker 1: I think it was instinctual and you just you guys
Speaker 1: leaned in and just ran with it. And clearly Mari
Speaker 1: had no shortage of love.
Speaker 4: Clearly, Yeah, we talk about that right, how her life
Speaker 4: was hard in so many ways, and but that her
Speaker 4: experience was to be surrounded by like a huge community
Speaker 4: of people that loved her. Like she never met a stranger.
Speaker 4: You know. We'd be like on the bus in San
Speaker 4: Francisco and there'd be some really pissed off looking guy
Speaker 4: and she'd just be like smiling at him, you know,
Speaker 4: like like on the bus and I just say, sir,
Speaker 4: I'm sorry. She's gonna keep doing this until just like
Speaker 4: give her a little something and show me you alone.
Speaker 4: But she just really she had a way of kind
Speaker 4: of demanding and captivating folks. And I think the thing
Speaker 4: that happened that, you know, along the way, was she
Speaker 4: developed the language skills very early. And in reflection, you know,
Speaker 4: we you kind of make sense of things, you know,
Speaker 4: as you look back, it's like she sure had a
Speaker 4: lot of things to say, and so she found the
Speaker 4: ability to communicate so early, and so it feels like
Speaker 4: we knew her for a really long time because she
Speaker 4: started speaking when she was like twelve and a half months,
Speaker 4: Oh wow. And then you know, very soon after started
Speaker 4: like telling people what to do, and you know, and
Speaker 4: I love that about her, and so I think those
Speaker 4: things all happened, and you couldn't help but love her
Speaker 4: little spirit just because she had this way of forcing
Speaker 4: you to even when things were hard. I really give
Speaker 4: all the credit to her. I feel like I learned
Speaker 4: how to navigate this from her, which feels like a
Speaker 4: lot of pressure to put on a baby, but the
Speaker 4: way that she you know, she started her day and
Speaker 4: she forced us to get up and laugh and entertain her.
Speaker 4: And so even the days where I feel like we
Speaker 4: wanted to just hide under the covers, right, that wasn't
Speaker 4: her agenda for the day. And so we kind of
Speaker 4: learned how to live in those dual realities, I think,
Speaker 4: super early, and it was an incredible gift that she
Speaker 4: gave us.
Speaker 2: Was absolutely What did the next few years look like?
Speaker 2: Were their doctor's appointments, were their hospital visits.
Speaker 4: At the time, there wasn't a treatment, and like any parent,
Speaker 4: I didn't believe them. So we went to multiple hospitals
Speaker 4: and saw all the specialists and the answers you know,
Speaker 4: really were clear with the disease, it's you lose muscle function,
Speaker 4: and so it wasn't kind of this rapid thing that happened.
Speaker 4: But you know, when she got a cold, the cold
Speaker 4: just was worse for her. So her first cold turned
Speaker 4: into a pneumonia, and then after that her next cold,
Speaker 4: her lungs collapsed and she was in the ICU. Because
Speaker 4: people look at a kid that can't walk or whatever,
Speaker 4: and they focus on that because that's important to us.
Speaker 4: But you use muscles to like cough and to swallow,
Speaker 4: and they're more important for those things. And so she
Speaker 4: got sicker when she got sick, and they started getting
Speaker 4: closer together. The first time she had a like I said,
Speaker 4: it was aneumonia, but we could stay at home. And
Speaker 4: then she was in the hospital, and then it was
Speaker 4: the ICU, and then it was the ICU for a
Speaker 4: couple of weeks. And in the beginning it was hard,
Speaker 4: but it felt like these kind of sporadic things that
Speaker 4: were happening. But eventually they started getting closer and closer together.
Speaker 4: And so when she was eighteen months, it was right
Speaker 4: after she had a feeding to put in, we relocated
Speaker 4: back to Seattle, just because despite our fabulous life in
Speaker 4: the Bay Area. We just needed to be with family,
Speaker 4: and so we moved into a duplex next door to
Speaker 4: my parents so that we could have extra support. And
Speaker 4: so that was a lifeline, I think for all of
Speaker 4: us to have Grandma and Grandpa next door. And that
Speaker 4: was just like her safe haven. So we didn't allow
Speaker 4: any medical equipment, nothing was allowed at Grandma's house, just
Speaker 4: so that she could have one place in the world
Speaker 4: that was hers. But the illnesses became frequent, and her
Speaker 4: ability to really bounce back to one hundred, you know,
Speaker 4: I think lessened over time. It just kept getting closer
Speaker 4: and closer together and worse and worse.
Speaker 2: Oh and as a child, I mean, as such a
Speaker 2: young child, the hospital visits like I hate going to
Speaker 2: the dentist, you know, for years of having cavities and
Speaker 2: stuff like, I can't imagine for a baby to have
Speaker 2: to go into the hospital. Did she react at all
Speaker 2: when you had to go on those trips.
Speaker 4: Yeah, you know, I think that was one of the
Speaker 4: hardest things was she developed like a real terror of
Speaker 4: the hospitals and of doctors, and so she would have
Speaker 4: like little babies, right, it's just in a place where
Speaker 4: you know, you can't intellectualize with a child why they
Speaker 4: have to do all these things. And so she would
Speaker 4: have panic attacks even when we would drive by the hospital.
Speaker 4: And so that was another part of it that I
Speaker 4: think made us really kind of take pause as parents.
Speaker 4: And you know, even when she was in the hospital,
Speaker 4: she just coped in just the most tragic ways. Right
Speaker 4: like one time she was sick and had to be intobating,
Speaker 4: she had a breathing tubein because she just couldn't get better.
Speaker 4: The only thing that made her feel better is if
Speaker 4: she could touch our faces. And so like my husband
Speaker 4: and I just like rotated for days and days and
Speaker 4: days just hovering over her little bed and she would
Speaker 4: touch our noses. And you know, I think there comes
Speaker 4: a point where you begin wondering, like what are we doing?
Speaker 4: Where does this go? And I think her experience and
Speaker 4: her reaction it really made us rethink kind of everything
Speaker 4: that we were doing because she was living it right,
Speaker 4: and her experience matters. I think it's easy to set
Speaker 4: that aside when you want your kid to be around forever,
Speaker 4: but we just we were confronted with it in a
Speaker 4: way that we couldn't ignore.
Speaker 2: Even in her illness, she was guiding you right, you
Speaker 2: said earlier that she's the one that guided you to
Speaker 2: get through those tough days and the reality of her situation.
Speaker 2: But then even when she was sickest, she continued to
Speaker 2: guide you. What did you decide to do.
Speaker 4: During one of her like last hospital stays, she was
Speaker 4: real pissed about it, and you know, we validated that,
Speaker 4: like she could be angry. And we were leaving the hospital,
Speaker 4: and I work at children's hospital now, and so I
Speaker 4: know when kids leave, we blow bubbles and we wave
Speaker 4: and try to make it like a kid friendly place.
Speaker 4: And she was pissed and she said like, goodbye, stupid hospital,
Speaker 4: like I'm never coming back here again. When I remember
Speaker 4: kind of doing the mom thing and having a conversation
Speaker 4: with her about I hope you don't have to come back,
Speaker 4: but you probably will and I know you hate it,
Speaker 4: but let's go home, and she was like, no, I'm
Speaker 4: never coming back here again. And early on, when Mari was,
Speaker 4: you know, first diagnosed, my husband and I made a
Speaker 4: promise to each other that we were never going to
Speaker 4: make her suffer. To prevent ours, I think it's easy
Speaker 4: to prioritize the avoidance of that horrible thing that's coming
Speaker 4: and so after she called us to the carpet, like
Speaker 4: she often did, we talked to the team that was
Speaker 4: taking care of her, and they were a palliative care
Speaker 4: team that helped her have quality of life like in
Speaker 4: the middle as a part of her illness and prioritized
Speaker 4: not just doing all the things that were possible, but
Speaker 4: making sure that she had joy and that she had play,
Speaker 4: and that she had experiences and she had support, so
Speaker 4: they would come to our house. So after that last
Speaker 4: hospital's stay, after she when she became ill again, we
Speaker 4: decided not to take her back to the hospital, and
Speaker 4: the hospital came to us. She was put on the
Speaker 4: hospice during her last illness, and we stayed home instead
Speaker 4: of going to the hospital, and her providers came to
Speaker 4: our house and helped make sure that she had all
Speaker 4: of the things that she needed to be comfortable and
Speaker 4: that we had all the resources we needed as parents
Speaker 4: to support her through that illness.
Speaker 2: That's beautiful that you were able to do that and
Speaker 2: keep her comfortable in her final days.
Speaker 3: So she celebrated her third birthday.
Speaker 4: Yeah, she celebrated her third birthday right before Christmas, and
Speaker 4: we had a really fun Christmas to make a Way
Speaker 4: Foundation set her up with a special like one on
Speaker 4: one visit with Santa Claus, and she was very demanding
Speaker 4: with Santa Claus that year, which is also a very
Speaker 4: funny story. She we like went to meet Santa and
Speaker 4: she wanted a microphone. So she did like the whole
Speaker 4: meet and greet with Santa, and we were getting ready
Speaker 4: to leave and she was like, I'm not leaving here
Speaker 4: without my microphone and we were like, oh, we didn't
Speaker 4: tell you. Santa is going to come bring you. Anyways,
Speaker 4: it was a whole thing, but we saw the Nutcracker.
Speaker 4: We did all the things. And so when January came,
Speaker 4: she got sick again and she was really in and
Speaker 4: out of it for a few days. And she woke
Speaker 4: up and she looked at me and my husband and
Speaker 4: she said, mom, I'm going to be a butterfly. I
Speaker 4: want to be a butterfly and fly into the sky,
Speaker 4: like won't that be nice? And she died the next morning.
Speaker 4: She didn't wake up again. And so that night, you know,
Speaker 4: we told her the story of when she was born
Speaker 4: and how awful it was, because she loved that so much,
Speaker 4: and you know, we read stories and she was able
Speaker 4: to die where she wanted to be at home with
Speaker 4: the dog in the bed and without all the machines
Speaker 4: and all the beeping. It was like the hardest thing ever.
Speaker 4: And I'm so grateful that we had the resources and
Speaker 4: the support really to make sure that she was able
Speaker 4: to die in the way that she wanted to die,
Speaker 4: and that she wasn't surrounded by the thing that terrified
Speaker 4: her the most. And so to have the community come
Speaker 4: and be with her and us in that way, it
Speaker 4: just takes my breath away to remember those moments, and
Speaker 4: I'm so grateful that she had that and we had that.
Speaker 1: You know, usually it's me filling space while Ash is
Speaker 1: like collecting herself. And I gotta tell you, on this one,
Speaker 1: it was like, I don't tear up get emotional often,
Speaker 1: and it's not because I mean, it's not because of
Speaker 1: the marine thing and all that crap. I think it's
Speaker 1: just a thing. But yeah, I was fighting it on
Speaker 1: that one. Yeah, I gotta tell you, like, it's what
Speaker 1: a blessing that it was on her terms, you know,
Speaker 1: because we don't always get that. I mean, you work
Speaker 1: in a hospital, you know, for a fact not always
Speaker 1: the case. And the fact that you and Jamie and
Speaker 1: your family in the community. You were able to find
Speaker 1: beauty in something that was just so tragic. Is such
Speaker 1: a rarity, but I think that's why you have such
Speaker 1: a magnetic soul, and I can only imagine Jamie's the
Speaker 1: same way.
Speaker 2: It's so beautiful, And like you said, I mean the
Speaker 2: fact that she was there bringing people together in her
Speaker 2: final moments. What was life like for you after that?
Speaker 4: That first year is kind of body Honestly, I don't
Speaker 4: remember all of it. But I went back to work
Speaker 4: like three months after she died because I realized I
Speaker 4: couldn't just be at home. I just needed something else
Speaker 4: to think about. And you know, we kind of trudged
Speaker 4: along in the beginning and just had a lot of
Speaker 4: folks that were looking out for us. And we were
Speaker 4: able to go to Hawaii together with my parents, which
Speaker 4: was a place that she had been to and we
Speaker 4: loved obviously, and so we just tried to figure out how,
Speaker 4: you know, to put one foot in front of the other.
Speaker 4: It feels like people are like, I don't know how
Speaker 4: you did it. I don't know what the other option was. Right,
Speaker 4: we were still here and she wasn't, and we had
Speaker 4: to learn how to live without her. I ended up
Speaker 4: applying to go to grad school and the following year
Speaker 4: went back to get my master's in social work because
Speaker 4: that was kind of my journey anyways, and it felt
Speaker 4: like the right time. And Jamie always wanted to be
Speaker 4: a firefighter and was kind of dabbling, and he really
Speaker 4: committed to that process too, and was really actively trying
Speaker 4: to get hired with the Seattle Fire Department. And so
Speaker 4: we just focused on work and on you know, just
Speaker 4: those kind of things because we had to. And I
Speaker 4: think it was the only thing we kind of knew
Speaker 4: how to do, and it was the only thing that
Speaker 4: was like future oriented that I think we could really
Speaker 4: hold on to. It was hard to look out into
Speaker 4: the future and think about how long life was going
Speaker 4: to be without Mari, even though we both knew that
Speaker 4: we wanted to live it, it just felt too hard.
Speaker 2: What a beautiful thing that you both chose fields where
Speaker 2: you're caring for people, where you're taking care of people.
Speaker 1: If like guys and gals like me, you know, that
Speaker 1: served in the military and had to go abroad, and
Speaker 1: like we couldn't do stuff that we do without knowing
Speaker 1: there's people like Jamie and you to take care of
Speaker 1: ours here while we're there. We're literally we're all battened
Speaker 1: for the same team when it comes to taking care
Speaker 1: of our loved ones. And so what you guys do
Speaker 1: is admirable and comes with its own challenges and struggles.
Speaker 1: I mean, they're not the easiest jobs in the world.
Speaker 1: Just like you said, you didn't have a in the Marines,
Speaker 1: you'd call it hip pocket class. Like, we didn't get
Speaker 1: a hip pocket class for whatever. Clearly you guys didn't
Speaker 1: have that. How do you prepare for that? No idea,
Speaker 1: We're just doing it.
Speaker 4: Yeah, yeah, I think that's exactly what it was, right.
Speaker 4: We just were like, we have to figure it out.
Speaker 4: And you know, Mari, like I said, she was this
Speaker 4: tiny person, but she had a really like deep and
Speaker 4: generous soul. And we talked a lot about gratitude with her,
Speaker 4: just because I think it's important and even in the
Speaker 4: context of like how hard so many things were. I
Speaker 4: think we had a lot of conversations as a family
Speaker 4: about how like fortunate we are to have so much
Speaker 4: and to have so many people that love us. And
Speaker 4: she didn't get in trouble often. But one of the
Speaker 4: things that I remember so deeply is that when she
Speaker 4: was being naughty, you know, or something, you know, we
Speaker 4: tell her like, Mari, you're not being grateful right now,
Speaker 4: and she would cry. She'd go, I want to be
Speaker 4: grateful more. I want to be grateful, and she would cry. Right.
Speaker 4: She just thought was like the worst the thing for
Speaker 4: her and the birthday that she had before she died,
Speaker 4: she didn't get to go to her party because she
Speaker 4: had to go to the hospital that morning she had
Speaker 4: gotten sick, and it just felt like a really cruel outcome.
Speaker 4: But this was her third birthday and that winter we
Speaker 4: had talked about people that were experiencing homelessness, and she
Speaker 4: asked me if we could buy houses for all of
Speaker 4: the families, and you know, I told her that we couldn't.
Speaker 4: She then said, then can we at least buy the mittens?
Speaker 4: And so for her birthday we asked people to bring
Speaker 4: mittens and warm items to give to our community. And
Speaker 4: it's like, I don't know a lot of children that
Speaker 4: ask for that, right, And so she just had this
Speaker 4: like I know, she was only three, just barely, but
Speaker 4: she had this like deep spirit that I think forced
Speaker 4: everybody to be just a little bit better. And so
Speaker 4: when Jamie and I were figuring out what we were
Speaker 4: going to do and how we were going to do it.
Speaker 4: Being in service to our community was already a value
Speaker 4: that we had, but it just felt like we had
Speaker 4: to do right by Mari in some way, and it
Speaker 4: didn't need to be you know, having a foundation in
Speaker 4: her name or whatever. You know, people do this in
Speaker 4: a lot of different ways, but it felt like if
Speaker 4: we were going to do one thing to honor her
Speaker 4: at the time, it really felt like we needed to
Speaker 4: live with that spirit and so our organic next steps
Speaker 4: we already were kind of in the fields that we
Speaker 4: wanted to be in, and so it just felt not
Speaker 4: easy but so important to kind of fulfill those missions
Speaker 4: and to live in service and work in service of
Speaker 4: our communities in the way that we do differently and
Speaker 4: sometimes they overlap, but we.
Speaker 3: Greatly appreciate that.
Speaker 2: And thank you for being such amazing, strong parents who
Speaker 2: teach gratitude. Sometimes it's so hard to do to find
Speaker 2: that space. I can completely relate todriw. I want to
Speaker 2: be grateful. I get it, I get it, but sometimes
Speaker 2: it's easier said than done. In taking care of the
Speaker 2: two of you, you kind of found a love and travel.
Speaker 3: What do you love so much about travel? What's your
Speaker 3: favorite place you've been?
Speaker 1: Oh?
Speaker 4: Man, oh, you know, I have a hard time identifying
Speaker 4: a favorite place. But last year we took a sailboat
Speaker 4: down the Nile and that was magical and incredible. It
Speaker 4: is like a part of gratitude practice. And I just
Speaker 4: feel like my capacity for love and compassion and empathy
Speaker 4: and joy grows like exponentially every single time I go somewhere.
Speaker 4: The world is kind and people are kind, and I
Speaker 4: mean the number of people that have invited me back
Speaker 4: to their house for tea, or brought me home for dinner,
Speaker 4: or helped us along our way. It just is this
Speaker 4: way of remembering that the world is full of goodness
Speaker 4: and also in the sadness that we've experienced, we are
Speaker 4: not unique in that way, right that the people are
Speaker 4: experiencing loss and figuring out how to keep it pushing
Speaker 4: all over the world. And so there is something really
Speaker 4: incredible about just opening up my soul and my heart
Speaker 4: to joy and to beauty and sometimes the hard things.
Speaker 4: And Jamie is really the same. So we just are
Speaker 4: always planning an adventure because we just pick up memories
Speaker 4: and friends and loved ones and stories and different ways
Speaker 4: of feeling grateful with every single place, but Egypt comes
Speaker 4: to the top of the mind because it just was like
Speaker 4: live in I don't know, it just felt fake. It
Speaker 4: was incredible, not just because of the sites, the people
Speaker 4: were were wonderful, right, And so those are the memories
Speaker 4: that I think I cherish the most.
Speaker 1: By the way you just described travel, I'm pretty sure
Speaker 1: you and Ashley were separated at birth. Thank you. I'm serious,
Speaker 1: Like it sounds almost verbatim how she would describe it,
Speaker 1: because I mean, I love it and love seeing the
Speaker 1: new places and all that, but I mean she could,
Speaker 1: she would do it every week of the year if she.
Speaker 3: Could, just getting to see how other people live.
Speaker 2: Really, our little bubble that we live in is just
Speaker 2: that it's a little bubble. There's a great, big world
Speaker 2: out there, full of beautiful people that have such different
Speaker 2: life experiences than us, and it just it's a perspective
Speaker 2: thing for me. I've always, since I was a child,
Speaker 2: wanted to broaden my horizons and see the world and
Speaker 2: meet all the people.
Speaker 3: My wonderlust, that's what I call it, because I love
Speaker 3: to wonder.
Speaker 1: I gotta ask Ma after the journey you and Jamie
Speaker 1: have been through. What's your life's mission at this point?
Speaker 4: That is not a heavy or deep question at all.
Speaker 1: I'm a very surface level kind of guy, you know.
Speaker 4: I think there's a lot of versions of this, but
Speaker 4: right now I think my mission is honestly to just
Speaker 4: live with as much joy and as much gratitude as
Speaker 4: robustly as Marie taught me. And that's Jamie too, And
Speaker 4: it looks different for us right in different ways at work,
Speaker 4: you know, we're different versions of ourselves. And he's so
Speaker 4: focused on the children in our community and making sure
Speaker 4: that they have a space at his station and that
Speaker 4: they feel seen, you know. And it's in travel, it's
Speaker 4: finding the corners of the world that maybe most call
Speaker 4: us and connecting with the people there. And so it
Speaker 4: really is just to grab life by the horns and
Speaker 4: to live with gratitude and joy and purpose and hope
Speaker 4: as much as we can. And it's not that it
Speaker 4: doesn't get hard, right, That life gets hard sometimes, but
Speaker 4: it's pretty easy I think at this point for us
Speaker 4: to find ourselves back towards the center and to be
Speaker 4: centered again. Because of all the things that we've lived together, right,
Speaker 4: we're stronger than we ever thought we could be. And
Speaker 4: Marie is with us in a way that is different
Speaker 4: than a few years ago when we were grieving parents,
Speaker 4: And I'm grateful for that part of the journey too,
Speaker 4: of just the way that I know that she's here
Speaker 4: and I feel her, and the way that I'm reminded
Speaker 4: of how wonderful she is that I didn't think was
Speaker 4: possible kind of earlier on in my story. So we're
Speaker 4: just living with joy and gratitude all the time.
Speaker 3: Thank you, Maya Scott. Thank you so much for your perspective.
Speaker 2: Thank you for your love and your gratitude and your
Speaker 2: courage to come and tell this story today. It's just
Speaker 2: the perspective we need to continue to go forward in
Speaker 2: our days, what days we're given right and just honoring
Speaker 2: and remembering your beautiful daughter and knowing that there's beautiful
Speaker 2: butterflies flying around all over the place. And I just
Speaker 2: truly appreciate the joy that you've given me and given
Speaker 2: us today.
Speaker 4: Thank you for giving me an opportunity to share a
Speaker 4: little bit of Marie's story. She really magic and body.
Speaker 4: So I'm grateful that more people will be able to
Speaker 4: know that.
Speaker 1: You and Jamie both even though you know, we didn't
Speaker 1: have the pleasure of meeting him yet, but we'll get
Speaker 1: to hang out with him and when we all go
Speaker 1: to Hawaii. But I got to tell you, I happen
Speaker 1: to know a lot of really tough, convicted people. It's
Speaker 1: such a gift to get to meet someone like you
Speaker 1: because you're those things, but your compassion and your gratitude
Speaker 1: and your joy and your love far outshines those things.
Speaker 1: And so you're a very special, unique person. And I
Speaker 1: want you to know that this particular episode made me
Speaker 1: a better person. So thank you for that.
Speaker 4: Oh, thank you. Yeah, Mari really is really the best teacher.
Speaker 4: So I'm happy to be the person to spread that message.
Speaker 4: And yeah, I'm grateful.
Speaker 3: Thank you so much for listening.
Speaker 2: If this episode touched you today, please share it and
Speaker 2: be part of making someone's day better.
Speaker 1: Put on your bad ass capes like Mari Maya and
Speaker 1: Jamie and go be great today. And remember you can't
Speaker 1: do epic stuff without epic people. Thank you for listening
Speaker 1: to the good Stuff.
Speaker 3: The Good Stuff is executive produced.
Speaker 2: By Ashley Shick, Jacob Shick, Leah Pictures, and you Code Media.
Speaker 2: Posted by Ashley Shick and Jacob Schick, Produced by Nick
Speaker 2: Cassellini and Ryan Counts House post production supervisor Will Tindy.
Speaker 2: Music editing by Will haywood Smith, edited by Mike Robinson,