July 11, 2023 • 41 mins
Maya Scott and her high school sweetheart Jamie were thrilled to become parents at 25 to a beautiful baby girl named Mari. The next few years were full of boundless love and joy until they received some devastating news. Maya opens up about their journey through life, love, loss and healing.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:08):
Welcome to the Good Stuff. I'm Jacob Shick and I'm
joined by my co host and wife, Ashley Shick.
Speaker 2 (00:13):
Jake is a third generation combat Marine and I'm a
gold starred granddaughter. We work together to serve military veterans,
first responders, frontline healthcare workers, and their families with mental
and emotional wellness through traditional and non traditional therapy.
Speaker 3 (00:27):
At One Tribe Foundation.
Speaker 1 (00:28):
We believe everyone has a story to tell, not only
about the peaks, but also the valleys they've been through
to get them to where they are today.
Speaker 2 (00:35):
Each week, we invite a guest to tell us their story,
to share with us the lessons they've learned that shaped
who they are and what they're doing to pay it
forward and give back.
Speaker 1 (00:44):
Our mission with this show is to dig deep into
our guest's journeys so that we can celebrate the hope
and inspiration their story has to offer.
Speaker 3 (00:51):
We're thrilled you're joining us again.
Speaker 1 (00:53):
Welcome to the Good Stuff.
Speaker 2 (00:56):
Our guest today is Maya Scott. Her story is about
young love, pregnancy, parenthood, and the unthinkable.
Speaker 1 (01:04):
Maya's daughter Mariy, was diagnosed with spinal muscular atrophy at
six months old and passed away shortly after turning three.
Mary's life was full of joy, love and hardships, and
we are so lucky to have Maya on the show
today to give us a glimpse of the glory that
was and is Mariy.
Speaker 3 (01:24):
After Marie passed, Maya found herself driven to help families
like hers, and today she is the director of the
Center for Diversity and Health Equity at Seattle Children's Hospital.
Her husband Jamie achieved his lifelong dream of becoming a firefighter,
serving the neighborhood he grew up in. Facing a mother
and father's worst nightmare, these two found beauty in life
(01:45):
through Mari's enduring spirit, which has led them to travel
the world and take care of their community.
Speaker 1 (01:51):
This is a miraculous conversation about love, strength, and living
life to the fullest.
Speaker 2 (02:04):
Maya Scott, we can't thank you enough for joining us
to tell us your story and the story of your
beautiful daughter, Mari. We know that you and your husband
Jamie live your lives in honor and celebration of Mari's
three beautiful years on this earth, and it is such
a privilege to have you on the show to spread
her spirit.
Speaker 4 (02:23):
That's exactly why right. Every single time I have an
opportunity to talk about just the really robust and incredible
way that she lived her life, feels like a really
small ask to share that, because I think there's so
many things that people need to hear just about the
way that she taught all of us. So I'm grateful
for the opportunity to share a little bit more about
(02:44):
her in the space.
Speaker 1 (02:46):
We're eternally grateful to you and your courage for doing this,
and so look to get us started. First things first,
how did you and Jamie meet.
Speaker 4 (03:00):
We met in high school. We were high school sweethearts,
and we had health class together, which is kind of
funny if you know what you learn in health class.
And we were assigned a group project in class, and
for some reason, like he scooted his chair all the
way across the room so that he could be in
my group, which should have been a sign. And the
rest was history. We fell in love and I went
(03:21):
home and told my mom like after I met him,
that I met the guy I'm going to marry today,
and I was like fifteen years old, and my mom
was like sure, like everybody says that. And then at
my wedding, I got to be really smug and rude
about it because we got married. So yeah, it was great.
You're like I told you so, Yep, exactly, that's exactly
what I said.
Speaker 3 (03:41):
I'm thinking back to high school.
Speaker 2 (03:43):
Did he throw any really great, you know, pickup line
down or anything, or he just I mean.
Speaker 3 (03:47):
Yeah, he scooted his chair all the way over to you.
Speaker 1 (03:50):
Or did he just completely invade your personal.
Speaker 4 (03:52):
Space a combination.
Speaker 2 (03:55):
He didn't.
Speaker 4 (03:56):
He wasn't like, you know, dropping pickup lines and stuff.
But after we started dating, like, he still had a
paper route. It was that deep in back in time,
and he used his paper route money to bring me
roses to school on our month anniversary every single month,
and so it wasn't a pickup line, but it was
game right. I was like, the paper route money to
buy the roses to bring to school felt like an
(04:18):
extreme flex when you were fifteen years old. It was
very romantic that.
Speaker 2 (04:22):
Yeah.
Speaker 1 (04:23):
I mean to the ladies on this, I'm thinking to myself, like,
come on, Jamie, like you're making the rest of us
look horrible.
Speaker 2 (04:31):
That's amazing and okay, so high school, sweetheart, and then
you did you wound up and got hitched.
Speaker 4 (04:38):
Yeah, so we got married super young. We got married
when we were twenty, and I tell people like, of course,
we have this wonderful love story, but it's also like
the dumbest thing I ever did. I don't know if
both things can be true at the same time. But
I don't recommend children to get married when they're twenty,
but here we are. Yes, we got married when we
were twenty and had a very small wedding which is
(05:00):
our family, and then a big reception with our massive
families back at home, and then like a month later,
we moved to Hawaii to start the rest of our lives.
And it was just a blast, I mean, to be newlyweds,
and I did my undergrad at University of Hawaii, and
I think it was just the perfect beginning, just to
get away from you know, all of the we were
kids in Seattle, and Seattle can be real small towny.
(05:22):
To start in a new place like Hawaii, it was
just it was magic. That was the best decision we
ever made.
Speaker 1 (05:28):
Had you been to Hawaii before.
Speaker 4 (05:31):
You know, my grandma was a genius and when she retired,
she lived in the Seattle winters in Honolulu and lived
like spring and summer here, so they call them snowbirds.
And so I had gone over back and forth when
I was like a little kid to see my grandma.
We would spend Christmas there every once in a while.
And there's a great deal, like we paid in state
(05:52):
tuition if you live on the West Coast. And so
I was not a super smart student back in the day.
I just didn't care that much about school. I guess
I was too busy, you know, being in love with
my high school boyfriend or something. But I could like
move to eastern Washington and go to college or move
to Hawaii, and so I chose Hawaii. So I'm a, yeah,
(06:13):
I'm a I love being near the water's brilliant.
Speaker 1 (06:16):
You're gonna have to be our tour guide. Yeah, that's
our fiftieth state.
Speaker 2 (06:20):
We know you love to travel, and we love to travel,
and we've done a lot of it for work, but
we do a lot of it for pleasure.
Speaker 3 (06:25):
And I've been to forty nine of the fifty states.
Speaker 2 (06:28):
Jake's been to forty eight of the fifty states, and
he still lacks Alaska, and neither of us have been
to Hawaii.
Speaker 3 (06:35):
So we're that's going to be our fiftieth.
Speaker 4 (06:37):
Oh my gosh, okay, way to like bring it home though,
like right, I mean the well done, Yes this is
I know this is not that podcast, but I can.
I'll send you a whole, like aggressively long list of
things to do in places to go.
Speaker 2 (06:51):
It's beautifect Well, we're just going to talk you into
coming with us.
Speaker 4 (06:54):
Yeah, I don't need to be talked into it. I don't.
I don't listen in.
Speaker 1 (06:59):
So it's done. It's done. You just got to figure
out when we're going to squeeze a laskin.
Speaker 2 (07:05):
So married at twenty and then when did y'all decide
to grow your family.
Speaker 4 (07:10):
I think we were twenty five when we decided to
have a baby. And again, right, we're kind of West
Coast folks, and that feels so young now that I
think about it, But I think because we've been together
for so long, it just didn't feel it didn't feel wilder,
you know, silly to have a kid. And so we were,
you know, I think, as prepared as you can be,
(07:32):
but like, you know, kind of poor. We were living
in the Bay Area, just kind of living the lives
of like people in our mid twenties in Oakland, California,
and just decided to have a baby, and I had
the best pregnancy and all these friends that didn't have
any kids, and so we just like I had this
whole crew of folks that just went on food adventures
(07:54):
with me and ate all the fun things that I
wanted to eat, and it wasn't really I felt so
energized and excited when we were preparing for Mari to come.
It was like such a special time waiting to meet her.
And so I remember it's all intertwined in, you know,
being twenty five, living in the Bay Area, having these
fantastic friends, just kind of waiting for this little person
(08:15):
to come join our crew.
Speaker 2 (08:16):
And it's so funny because parents always say that, oh,
we're waiting for the right time to have It's never
the right time, right.
Speaker 3 (08:22):
What were y'all doing professionally at that time?
Speaker 4 (08:25):
So I had a really cool job at the time.
I was working for a small nonprofit adoption agency, which
was like my first big kid job out of college.
And I got to help look for families adoptive families
for kids in foster care for the state of California.
And I've adopted from foster care, and so it was
(08:46):
super meaningful and full circle. And Jamie was working for
like the Duty Free company, so that was his job
in Hawaii, and transferred to San Francisco and was like
a you know, liquor and wine manager, and you know,
they weren't like our forever jobs, but they were good enough.
And so we were, you know, just kind of chugging
along with our jobs and living our best life in
(09:08):
the Bay Area. I can't stress that enough fun place
to be when you're young.
Speaker 3 (09:12):
Yeah, no kidding, or when you're old, or pretty much any.
Speaker 4 (09:16):
Time anytime, yeah, anytime.
Speaker 2 (09:18):
Yeah, So this beautiful bundle of joy comes along.
Speaker 3 (09:22):
Tell us about Mari.
Speaker 4 (09:24):
Oh my gosh. She came into the world like with
such purpose. And you hear when you're pregnant that your
kids are just going to be who they are. You
don't really have much control. She came into the world
with clarity and purpose, even as like a newborn. We
remember looking at her and being like she's like staring
us down, like she was just super present in the world,
(09:47):
and it was so exciting to just get to know her.
So she came on her own time, right when she
wanted to. And you know, I stayed at home for
like twenty two hours and had labored at home, and
then she came two hours later and she just unfolded
like a flower and just kind of looked at everybody,
And I remember that so clearly, just her dark eyes
(10:07):
just kind of checking us out. I tell this funny
story because she loved to hear about being born later on,
so she was super hyped to know how painful it
was and how like she was, you know, like she
she wanted me to tell her this story all the time.
But all of our friends came to the hospital and
(10:28):
were waiting, and I didn't know it either, And so
when she was born, there was all these folks that
were waiting to meet her, and so one after the
other they came in and helped her and snuggled her.
And later on in life, when she learned about like
the Christmas story and like Baby Jesus, she learned about
it and she said, oh, Baby Jesus was just like me.
Everybody was waiting to meet Baby Jesus suit just like me.
(10:48):
And I was like, like, you might have it like
a little bit backwards, but you know, that's one interpretation
of the story. But she just was captivating from the
time that she arrived and I know I'm biased as
her parent, but she just had a special energy.
Speaker 1 (11:06):
I'm curious to know the name Maury, where did that
come from?
Speaker 4 (11:11):
So her full name is Marielle, and we called her
mari for short. My mom's name is Mary Ellen, and
so it's kind of an interpretation of a few family names.
But she liked to be called Mariy for short, and
we nicknamed her that, and then she kind of embraced
it when she was able to tell people what she
wanted to be called, which she wasn't shy about.
Speaker 2 (11:31):
She sounds like, I mean, not just a bundle of joy,
but just like you said, she came in with clarity
and purpose, just such a presence.
Speaker 4 (11:40):
That's yeahful. She certainly made her presence known even before
she could talk. She just had a way of kind
of peering into people's eyes and demanding their attention, even
when she was just a tiny little thing.
Speaker 3 (11:52):
So how did she develop as she was growing older?
Speaker 4 (11:56):
She was ahead of all of her milestones for a while.
And you know, you like pretend like that's not exciting,
but it is. She rolled over really early and we
were kind of proud of that. And I remember noticing
one day that she couldn't roll over anymore. She was trying,
but she couldn't. And you know, I'm a little bit
(12:18):
of a like a nervous nelly or there's you know,
a million ways to describe it. I remember just noting
that and being really freaked out by that, and so
taking her to her pediatrician, who I think tried not
to freak us out but wanted to do for their
workup and have her be seen by a physical therapists.
It could be a range of like absolutely nothing to
something horrifying, and so we you know, started on kind
(12:40):
of a medical process totally unexpectedly, just when we noticed
that she couldn't do the things that she wanted to
do anymore. I think I was a little naive even
going into that, of how scary her future could become.
Speaker 2 (12:53):
I think that's completely natural to be the nervous nelly,
and especially first time mom.
Speaker 1 (12:58):
From the mall perspective, I think that's a first time
parent thing. You know. I think you're just like, like
I told you, like I would fall asleep sleeping at
the end of the bed when Jackson was you know,
because he was in the crip thing right at the
end of the bed. And I would just like just
watch them breathe and be at the end of the
(13:20):
bed and then I'd wake up like that, Yeah, I
think it's normal. There are thing they're ours, you know.
Just like you said, it's never a perfect time. You
think you could do everything in the world and think
that you're like okay, I'm ready, so ready, and then
that little human being blesses the world and you're like,
oh my god.
Speaker 4 (13:41):
Yep, yep, everyone's the best parent in the world, like
before they have children. It's this is a really interesting vibe,
like you know all, you have, all the answers, you
know everything, and then you have a kid and you're like, okay,
I am I am humbled. I know nothing at all.
Speaker 1 (13:55):
Yeah, no doubt about it.
Speaker 2 (13:57):
Throw all the books, all the guides away, let me
just do this thing. So when the docs started doing
the research and started running some of the tests, what
did you discover?
Speaker 4 (14:10):
So we were called into an appointment and met with
her doctors who told us that she was diagnosed with
a disease called spinal muscular atrophy and there's kind of
a range of severity and it's one of those things
that catching it earlier is the opposite of good. It's terrible.
The earlier you find it, the more severe it is.
(14:31):
It's when the symptoms present. I remember bits and pieces
of the conversation, not that much, just because you know,
everything kind of goes dark when you're confronted with something horrible.
I remember him telling us like, there's nothing you can do,
like take her home and love her because she's not
going to live a long life. We lived in the
(14:52):
Bay Area, we didn't have a car, and I remember like,
instead of taking the bus back to our apartment like
we always did, my husband and I we walked all
the way home, just like, you know, kind of breathless,
because it wasn't only that she had this disease that
we didn't know anything about, but it was that there
was no hope that was kind of put in front
of us when we learned that there wasn't a thing
(15:13):
that we could do or a medicine that we could take.
It was just this is going to be awful. She's
gonna die. There's nothing we can do about it. It
just took my breath away and it didn't make sense
because besides not being able to roll over anymore, she
wasn't sick right. There wasn't like an illness in front
of us. So she was just this like happy little
five and a half or six month old baby doing
(15:35):
what five and a half and six month old babies do.
There was just this really intense dichotomy between like what
we heard and what we were looking at, and I
just it's hard to make sense of those two realities
at the same time, because you know, kids don't stop, right,
You got to like get up and do the thing
the next day. And so it just didn't match up
(15:56):
to where we were emotionally, which I think in reflection
was a good thing maybe, but I think it made
it hard in real time for sure.
Speaker 2 (16:04):
I Mean, I'm sitting here thinking like, how do you
get this devastating news that you've just received and then
you have to go on parenting right, acting like nothing's wrong,
acting like everything's fine.
Speaker 3 (16:15):
How did you cope?
Speaker 4 (16:17):
I'm lucky to be surrounded by a lot of incredible people,
and so I remember talking to my mom and I
remember my friends coming over. I think she forced us
to cope. She was just like the embodiment of joy,
and so I just in reflection, had this like pit
(16:39):
in my stomach for the longest time. But I think
there was a part of me that just tried to
set aside all the things that were to come, because
you know, I had to get up, my husband had
to go to work. I had a baby that wanted
to engage, and I think demanded that of us. And
so we really just tried to do the things that
we were supposed to do, right, take her to story
(17:00):
time and you know, get outside and read books. And
I think early on got to a place where we
were really going to soak in our time with her,
right that was the easiest thing to come to, was, well,
if she's gonna die, then we have to love her extra,
we have to do all the things extra. And so
we really did that and started celebrating her birthday every
(17:22):
month instead of every year, just because we wanted to
have celebrations, right, and she deserved to be celebrated, And
so we just decided to start doing those things and
do them all the time, because I think that was
the only thing that we could control, right, was how
we lived with her. Everything else was just happening, and
so we're like, damn it, if everything else is happening
(17:43):
and we have no control over that, then we're going
to have some fun right now. And it wasn't easy, right,
it wasn't perfect all the time, but it was so
really a mission.
Speaker 1 (17:52):
You and Jamie clearly decided, Hey, let's grab a hold
of our grit grace. We got to keep putting one
foot in front of the other because this beautiful, precious
angel doesn't know about this devastating news. And I think
(18:13):
the doctor what sound advice? Go love her all the way,
you know, And then you guys knowing, hey, what can
we do? Because how much do all of us We
were just talking about that this week. We forget to
celebrate the small things like we forget, maybe not even
so much forget, but it's like, eh, it's just a
(18:34):
small thing, like we didn't win the lottery, so it's
not the big of a deal, or like you know
what I mean. And you guys were intentional about it.
That had to play a role in having the internal
fortitude to keep going next step. And I yeah, there's
no manual on how to do that, Like there's no
class you can take to give you the perseverance of
(18:58):
perspective you need to do the loving the best you can.
I think it was instinctual and you just you guys
leaned in and just ran with it. And clearly Mari
had no shortage of love.
Speaker 4 (19:13):
Clearly, Yeah, we talk about that right, how her life
was hard in so many ways, and but that her
experience was to be surrounded by like a huge community
of people that loved her. Like she never met a stranger.
You know. We'd be like on the bus in San
Francisco and there'd be some really pissed off looking guy
and she'd just be like smiling at him, you know,
(19:36):
like like on the bus and I just say, sir,
I'm sorry. She's gonna keep doing this until just like
give her a little something and show me you alone.
But she just really she had a way of kind
of demanding and captivating folks. And I think the thing
that happened that, you know, along the way, was she
developed the language skills very early. And in reflection, you know,
(19:58):
we you kind of make sense of things, you know,
as you look back, it's like she sure had a
lot of things to say, and so she found the
ability to communicate so early, and so it feels like
we knew her for a really long time because she
started speaking when she was like twelve and a half months,
Oh wow. And then you know, very soon after started
like telling people what to do, and you know, and
(20:20):
I love that about her, and so I think those
things all happened, and you couldn't help but love her
little spirit just because she had this way of forcing
you to even when things were hard. I really give
all the credit to her. I feel like I learned
how to navigate this from her, which feels like a
lot of pressure to put on a baby, but the
(20:41):
way that she you know, she started her day and
she forced us to get up and laugh and entertain her.
And so even the days where I feel like we
wanted to just hide under the covers, right, that wasn't
her agenda for the day. And so we kind of
learned how to live in those dual realities, I think,
super early, and it was an incredible gift that she
gave us.
Speaker 2 (21:00):
Was absolutely What did the next few years look like?
Were their doctor's appointments, were their hospital visits.
Speaker 4 (21:07):
At the time, there wasn't a treatment, and like any parent,
I didn't believe them. So we went to multiple hospitals
and saw all the specialists and the answers you know,
really were clear with the disease, it's you lose muscle function,
and so it wasn't kind of this rapid thing that happened.
But you know, when she got a cold, the cold
(21:29):
just was worse for her. So her first cold turned
into a pneumonia, and then after that her next cold,
her lungs collapsed and she was in the ICU. Because
people look at a kid that can't walk or whatever,
and they focus on that because that's important to us.
But you use muscles to like cough and to swallow,
and they're more important for those things. And so she
(21:52):
got sicker when she got sick, and they started getting
closer together. The first time she had a like I said,
it was aneumonia, but we could stay at home. And
then she was in the hospital, and then it was
the ICU, and then it was the ICU for a
couple of weeks. And in the beginning it was hard,
but it felt like these kind of sporadic things that
(22:14):
were happening. But eventually they started getting closer and closer together.
And so when she was eighteen months, it was right
after she had a feeding to put in, we relocated
back to Seattle, just because despite our fabulous life in
the Bay Area. We just needed to be with family,
and so we moved into a duplex next door to
(22:34):
my parents so that we could have extra support. And
so that was a lifeline, I think for all of
us to have Grandma and Grandpa next door. And that
was just like her safe haven. So we didn't allow
any medical equipment, nothing was allowed at Grandma's house, just
so that she could have one place in the world
that was hers. But the illnesses became frequent, and her
(22:55):
ability to really bounce back to one hundred, you know,
I think lessened over time. It just kept getting closer
and closer together and worse and worse.
Speaker 2 (23:05):
Oh and as a child, I mean, as such a
young child, the hospital visits like I hate going to
the dentist, you know, for years of having cavities and
stuff like, I can't imagine for a baby to have
to go into the hospital. Did she react at all
when you had to go on those trips.
Speaker 4 (23:20):
Yeah, you know, I think that was one of the
hardest things was she developed like a real terror of
the hospitals and of doctors, and so she would have
like little babies, right, it's just in a place where
you know, you can't intellectualize with a child why they
have to do all these things. And so she would
(23:41):
have panic attacks even when we would drive by the hospital.
And so that was another part of it that I
think made us really kind of take pause as parents.
And you know, even when she was in the hospital,
she just coped in just the most tragic ways. Right
like one time she was sick and had to be intobating,
she had a breathing tubein because she just couldn't get better.
(24:03):
The only thing that made her feel better is if
she could touch our faces. And so like my husband
and I just like rotated for days and days and
days just hovering over her little bed and she would
touch our noses. And you know, I think there comes
a point where you begin wondering, like what are we doing?
Where does this go? And I think her experience and
her reaction it really made us rethink kind of everything
(24:26):
that we were doing because she was living it right,
and her experience matters. I think it's easy to set
that aside when you want your kid to be around forever,
but we just we were confronted with it in a
way that we couldn't ignore.
Speaker 2 (24:39):
Even in her illness, she was guiding you right, you
said earlier that she's the one that guided you to
get through those tough days and the reality of her situation.
But then even when she was sickest, she continued to
guide you. What did you decide to do.
Speaker 4 (24:54):
During one of her like last hospital stays, she was
real pissed about it, and you know, we validated that,
like she could be angry. And we were leaving the hospital,
and I work at children's hospital now, and so I
know when kids leave, we blow bubbles and we wave
and try to make it like a kid friendly place.
And she was pissed and she said like, goodbye, stupid hospital,
(25:16):
like I'm never coming back here again. When I remember
kind of doing the mom thing and having a conversation
with her about I hope you don't have to come back,
but you probably will and I know you hate it,
but let's go home, and she was like, no, I'm
never coming back here again. And early on, when Mari was,
you know, first diagnosed, my husband and I made a
promise to each other that we were never going to
(25:38):
make her suffer. To prevent ours, I think it's easy
to prioritize the avoidance of that horrible thing that's coming
and so after she called us to the carpet, like
she often did, we talked to the team that was
taking care of her, and they were a palliative care
team that helped her have quality of life like in
(25:58):
the middle as a part of her illness and prioritized
not just doing all the things that were possible, but
making sure that she had joy and that she had play,
and that she had experiences and she had support, so
they would come to our house. So after that last
hospital's stay, after she when she became ill again, we
decided not to take her back to the hospital, and
(26:20):
the hospital came to us. She was put on the
hospice during her last illness, and we stayed home instead
of going to the hospital, and her providers came to
our house and helped make sure that she had all
of the things that she needed to be comfortable and
that we had all the resources we needed as parents
to support her through that illness.
Speaker 2 (26:43):
That's beautiful that you were able to do that and
keep her comfortable in her final days.
Speaker 3 (26:49):
So she celebrated her third birthday.
Speaker 4 (26:53):
Yeah, she celebrated her third birthday right before Christmas, and
we had a really fun Christmas to make a Way
Foundation set her up with a special like one on
one visit with Santa Claus, and she was very demanding
with Santa Claus that year, which is also a very
funny story. She we like went to meet Santa and
she wanted a microphone. So she did like the whole
(27:15):
meet and greet with Santa, and we were getting ready
to leave and she was like, I'm not leaving here
without my microphone and we were like, oh, we didn't
tell you. Santa is going to come bring you. Anyways,
it was a whole thing, but we saw the Nutcracker.
We did all the things. And so when January came,
she got sick again and she was really in and
out of it for a few days. And she woke
(27:37):
up and she looked at me and my husband and
she said, mom, I'm going to be a butterfly. I
want to be a butterfly and fly into the sky,
like won't that be nice? And she died the next morning.
She didn't wake up again. And so that night, you know,
we told her the story of when she was born
and how awful it was, because she loved that so much,
and you know, we read stories and she was able
(28:01):
to die where she wanted to be at home with
the dog in the bed and without all the machines
and all the beeping. It was like the hardest thing ever.
And I'm so grateful that we had the resources and
the support really to make sure that she was able
to die in the way that she wanted to die,
(28:21):
and that she wasn't surrounded by the thing that terrified
her the most. And so to have the community come
and be with her and us in that way, it
just takes my breath away to remember those moments, and
I'm so grateful that she had that and we had that.
Speaker 1 (28:40):
You know, usually it's me filling space while Ash is
like collecting herself. And I gotta tell you, on this one,
it was like, I don't tear up get emotional often,
and it's not because I mean, it's not because of
the marine thing and all that crap. I think it's
just a thing. But yeah, I was fighting it on
that one. Yeah, I gotta tell you, like, it's what
(29:02):
a blessing that it was on her terms, you know,
because we don't always get that. I mean, you work
in a hospital, you know, for a fact not always
the case. And the fact that you and Jamie and
your family in the community. You were able to find
beauty in something that was just so tragic. Is such
(29:25):
a rarity, but I think that's why you have such
a magnetic soul, and I can only imagine Jamie's the
same way.
Speaker 2 (29:31):
It's so beautiful, And like you said, I mean the
fact that she was there bringing people together in her
final moments. What was life like for you after that?
Speaker 4 (29:43):
That first year is kind of body Honestly, I don't
remember all of it. But I went back to work
like three months after she died because I realized I
couldn't just be at home. I just needed something else
to think about. And you know, we kind of trudged
along in the beginning and just had a lot of
(30:05):
folks that were looking out for us. And we were
able to go to Hawaii together with my parents, which
was a place that she had been to and we
loved obviously, and so we just tried to figure out how,
you know, to put one foot in front of the other.
It feels like people are like, I don't know how
you did it. I don't know what the other option was. Right,
we were still here and she wasn't, and we had
(30:28):
to learn how to live without her. I ended up
applying to go to grad school and the following year
went back to get my master's in social work because
that was kind of my journey anyways, and it felt
like the right time. And Jamie always wanted to be
a firefighter and was kind of dabbling, and he really
committed to that process too, and was really actively trying
(30:50):
to get hired with the Seattle Fire Department. And so
we just focused on work and on you know, just
those kind of things because we had to. And I
think it was the only thing we kind of knew
how to do, and it was the only thing that
was like future oriented that I think we could really
hold on to. It was hard to look out into
(31:10):
the future and think about how long life was going
to be without Mari, even though we both knew that
we wanted to live it, it just felt too hard.
Speaker 2 (31:19):
What a beautiful thing that you both chose fields where
you're caring for people, where you're taking care of people.
Speaker 1 (31:26):
If like guys and gals like me, you know, that
served in the military and had to go abroad, and
like we couldn't do stuff that we do without knowing
there's people like Jamie and you to take care of
ours here while we're there. We're literally we're all battened
for the same team when it comes to taking care
(31:47):
of our loved ones. And so what you guys do
is admirable and comes with its own challenges and struggles.
I mean, they're not the easiest jobs in the world.
Just like you said, you didn't have a in the Marines,
you'd call it hip pocket class. Like, we didn't get
a hip pocket class for whatever. Clearly you guys didn't
have that. How do you prepare for that? No idea,
We're just doing it.
Speaker 4 (32:09):
Yeah, yeah, I think that's exactly what it was, right.
We just were like, we have to figure it out.
And you know, Mari, like I said, she was this
tiny person, but she had a really like deep and
generous soul. And we talked a lot about gratitude with her,
just because I think it's important and even in the
context of like how hard so many things were. I
(32:31):
think we had a lot of conversations as a family
about how like fortunate we are to have so much
and to have so many people that love us. And
she didn't get in trouble often. But one of the
things that I remember so deeply is that when she
was being naughty, you know, or something, you know, we
tell her like, Mari, you're not being grateful right now,
(32:52):
and she would cry. She'd go, I want to be
grateful more. I want to be grateful, and she would cry. Right.
She just thought was like the worst the thing for
her and the birthday that she had before she died,
she didn't get to go to her party because she
had to go to the hospital that morning she had
gotten sick, and it just felt like a really cruel outcome.
(33:12):
But this was her third birthday and that winter we
had talked about people that were experiencing homelessness, and she
asked me if we could buy houses for all of
the families, and you know, I told her that we couldn't.
She then said, then can we at least buy the mittens?
And so for her birthday we asked people to bring
mittens and warm items to give to our community. And
(33:35):
it's like, I don't know a lot of children that
ask for that, right, And so she just had this
like I know, she was only three, just barely, but
she had this like deep spirit that I think forced
everybody to be just a little bit better. And so
when Jamie and I were figuring out what we were
going to do and how we were going to do it.
(33:56):
Being in service to our community was already a value
that we had, but it just felt like we had
to do right by Mari in some way, and it
didn't need to be you know, having a foundation in
her name or whatever. You know, people do this in
a lot of different ways, but it felt like if
we were going to do one thing to honor her
(34:17):
at the time, it really felt like we needed to
live with that spirit and so our organic next steps
we already were kind of in the fields that we
wanted to be in, and so it just felt not
easy but so important to kind of fulfill those missions
and to live in service and work in service of
our communities in the way that we do differently and
(34:38):
sometimes they overlap, but we.
Speaker 3 (34:41):
Greatly appreciate that.
Speaker 2 (34:42):
And thank you for being such amazing, strong parents who
teach gratitude. Sometimes it's so hard to do to find
that space. I can completely relate todriw. I want to
be grateful. I get it, I get it, but sometimes
it's easier said than done. In taking care of the
two of you, you kind of found a love and travel.
Speaker 3 (35:04):
What do you love so much about travel? What's your
favorite place you've been?
Speaker 1 (35:08):
Oh?
Speaker 4 (35:08):
Man, oh, you know, I have a hard time identifying
a favorite place. But last year we took a sailboat
down the Nile and that was magical and incredible. It
is like a part of gratitude practice. And I just
feel like my capacity for love and compassion and empathy
(35:29):
and joy grows like exponentially every single time I go somewhere.
The world is kind and people are kind, and I
mean the number of people that have invited me back
to their house for tea, or brought me home for dinner,
or helped us along our way. It just is this
way of remembering that the world is full of goodness
and also in the sadness that we've experienced, we are
(35:51):
not unique in that way, right that the people are
experiencing loss and figuring out how to keep it pushing
all over the world. And so there is something really
incredible about just opening up my soul and my heart
to joy and to beauty and sometimes the hard things.
And Jamie is really the same. So we just are
(36:11):
always planning an adventure because we just pick up memories
and friends and loved ones and stories and different ways
of feeling grateful with every single place, but Egypt comes
to the top of the mind because it just was like
live in I don't know, it just felt fake. It
was incredible, not just because of the sites, the people
were were wonderful, right, And so those are the memories
(36:34):
that I think I cherish the most.
Speaker 1 (36:36):
By the way you just described travel, I'm pretty sure
you and Ashley were separated at birth. Thank you. I'm serious,
Like it sounds almost verbatim how she would describe it,
because I mean, I love it and love seeing the
new places and all that, but I mean she could,
she would do it every week of the year if she.
Speaker 3 (36:57):
Could, just getting to see how other people live.
Speaker 2 (36:59):
Really, our little bubble that we live in is just
that it's a little bubble. There's a great, big world
out there, full of beautiful people that have such different
life experiences than us, and it just it's a perspective
thing for me. I've always, since I was a child,
wanted to broaden my horizons and see the world and
meet all the people.
Speaker 3 (37:19):
My wonderlust, that's what I call it, because I love
to wonder.
Speaker 1 (37:22):
I gotta ask Ma after the journey you and Jamie
have been through. What's your life's mission at this point?
Speaker 4 (37:30):
That is not a heavy or deep question at all.
Speaker 1 (37:34):
I'm a very surface level kind of guy, you know.
Speaker 4 (37:38):
I think there's a lot of versions of this, but
right now I think my mission is honestly to just
live with as much joy and as much gratitude as
robustly as Marie taught me. And that's Jamie too, And
it looks different for us right in different ways at work,
(38:00):
you know, we're different versions of ourselves. And he's so
focused on the children in our community and making sure
that they have a space at his station and that
they feel seen, you know. And it's in travel, it's
finding the corners of the world that maybe most call
us and connecting with the people there. And so it
really is just to grab life by the horns and
(38:21):
to live with gratitude and joy and purpose and hope
as much as we can. And it's not that it
doesn't get hard, right, That life gets hard sometimes, but
it's pretty easy I think at this point for us
to find ourselves back towards the center and to be
centered again. Because of all the things that we've lived together, right,
we're stronger than we ever thought we could be. And
(38:43):
Marie is with us in a way that is different
than a few years ago when we were grieving parents,
And I'm grateful for that part of the journey too,
of just the way that I know that she's here
and I feel her, and the way that I'm reminded
of how wonderful she is that I didn't think was
possible kind of earlier on in my story. So we're
just living with joy and gratitude all the time.
Speaker 3 (39:06):
Thank you, Maya Scott. Thank you so much for your perspective.
Speaker 2 (39:09):
Thank you for your love and your gratitude and your
courage to come and tell this story today. It's just
the perspective we need to continue to go forward in
our days, what days we're given right and just honoring
and remembering your beautiful daughter and knowing that there's beautiful
butterflies flying around all over the place. And I just
(39:31):
truly appreciate the joy that you've given me and given
us today.
Speaker 4 (39:35):
Thank you for giving me an opportunity to share a
little bit of Marie's story. She really magic and body.
So I'm grateful that more people will be able to
know that.
Speaker 1 (39:45):
You and Jamie both even though you know, we didn't
have the pleasure of meeting him yet, but we'll get
to hang out with him and when we all go
to Hawaii. But I got to tell you, I happen
to know a lot of really tough, convicted people. It's
such a gift to get to meet someone like you
because you're those things, but your compassion and your gratitude
(40:08):
and your joy and your love far outshines those things.
And so you're a very special, unique person. And I
want you to know that this particular episode made me
a better person. So thank you for that.
Speaker 4 (40:23):
Oh, thank you. Yeah, Mari really is really the best teacher.
So I'm happy to be the person to spread that message.
And yeah, I'm grateful.
Speaker 3 (40:33):
Thank you so much for listening.
Speaker 2 (40:35):
If this episode touched you today, please share it and
be part of making someone's day better.
Speaker 1 (40:40):
Put on your bad ass capes like Mari Maya and
Jamie and go be great today. And remember you can't
do epic stuff without epic people. Thank you for listening
to the good Stuff.
Speaker 3 (40:54):
The Good Stuff is executive produced.
Speaker 2 (40:56):
By Ashley Shick, Jacob Shick, Leah Pictures, and you Code Media.
Posted by Ashley Shick and Jacob Schick, Produced by Nick
Cassellini and Ryan Counts House post production supervisor Will Tindy.
Music editing by Will haywood Smith, edited by Mike Robinson,
Welcome to the Good Stuff. I'm Jacob Shick and I'm
joined by my co host and wife, Ashley Shick.
Speaker 2 (00:13):
Jake is a third generation combat Marine and I'm a
gold starred granddaughter. We work together to serve military veterans,
first responders, frontline healthcare workers, and their families with mental
and emotional wellness through traditional and non traditional therapy.
Speaker 3 (00:27):
At One Tribe Foundation.
Speaker 1 (00:28):
We believe everyone has a story to tell, not only
about the peaks, but also the valleys they've been through
to get them to where they are today.
Speaker 2 (00:35):
Each week, we invite a guest to tell us their story,
to share with us the lessons they've learned that shaped
who they are and what they're doing to pay it
forward and give back.
Speaker 1 (00:44):
Our mission with this show is to dig deep into
our guest's journeys so that we can celebrate the hope
and inspiration their story has to offer.
Speaker 3 (00:51):
We're thrilled you're joining us again.
Speaker 1 (00:53):
Welcome to the Good Stuff.
Speaker 2 (00:56):
Our guest today is Maya Scott. Her story is about
young love, pregnancy, parenthood, and the unthinkable.
Speaker 1 (01:04):
Maya's daughter Mariy, was diagnosed with spinal muscular atrophy at
six months old and passed away shortly after turning three.
Mary's life was full of joy, love and hardships, and
we are so lucky to have Maya on the show
today to give us a glimpse of the glory that
was and is Mariy.
Speaker 3 (01:24):
After Marie passed, Maya found herself driven to help families
like hers, and today she is the director of the
Center for Diversity and Health Equity at Seattle Children's Hospital.
Her husband Jamie achieved his lifelong dream of becoming a firefighter,
serving the neighborhood he grew up in. Facing a mother
and father's worst nightmare, these two found beauty in life
(01:45):
through Mari's enduring spirit, which has led them to travel
the world and take care of their community.
Speaker 1 (01:51):
This is a miraculous conversation about love, strength, and living
life to the fullest.
Speaker 2 (02:04):
Maya Scott, we can't thank you enough for joining us
to tell us your story and the story of your
beautiful daughter, Mari. We know that you and your husband
Jamie live your lives in honor and celebration of Mari's
three beautiful years on this earth, and it is such
a privilege to have you on the show to spread
her spirit.
Speaker 4 (02:23):
That's exactly why right. Every single time I have an
opportunity to talk about just the really robust and incredible
way that she lived her life, feels like a really
small ask to share that, because I think there's so
many things that people need to hear just about the
way that she taught all of us. So I'm grateful
for the opportunity to share a little bit more about
(02:44):
her in the space.
Speaker 1 (02:46):
We're eternally grateful to you and your courage for doing this,
and so look to get us started. First things first,
how did you and Jamie meet.
Speaker 4 (03:00):
We met in high school. We were high school sweethearts,
and we had health class together, which is kind of
funny if you know what you learn in health class.
And we were assigned a group project in class, and
for some reason, like he scooted his chair all the
way across the room so that he could be in
my group, which should have been a sign. And the
rest was history. We fell in love and I went
(03:21):
home and told my mom like after I met him,
that I met the guy I'm going to marry today,
and I was like fifteen years old, and my mom
was like sure, like everybody says that. And then at
my wedding, I got to be really smug and rude
about it because we got married. So yeah, it was great.
You're like I told you so, Yep, exactly, that's exactly
what I said.
Speaker 3 (03:41):
I'm thinking back to high school.
Speaker 2 (03:43):
Did he throw any really great, you know, pickup line
down or anything, or he just I mean.
Speaker 3 (03:47):
Yeah, he scooted his chair all the way over to you.
Speaker 1 (03:50):
Or did he just completely invade your personal.
Speaker 4 (03:52):
Space a combination.
Speaker 2 (03:55):
He didn't.
Speaker 4 (03:56):
He wasn't like, you know, dropping pickup lines and stuff.
But after we started dating, like, he still had a
paper route. It was that deep in back in time,
and he used his paper route money to bring me
roses to school on our month anniversary every single month,
and so it wasn't a pickup line, but it was
game right. I was like, the paper route money to
buy the roses to bring to school felt like an
(04:18):
extreme flex when you were fifteen years old. It was
very romantic that.
Speaker 2 (04:22):
Yeah.
Speaker 1 (04:23):
I mean to the ladies on this, I'm thinking to myself, like,
come on, Jamie, like you're making the rest of us
look horrible.
Speaker 2 (04:31):
That's amazing and okay, so high school, sweetheart, and then
you did you wound up and got hitched.
Speaker 4 (04:38):
Yeah, so we got married super young. We got married
when we were twenty, and I tell people like, of course,
we have this wonderful love story, but it's also like
the dumbest thing I ever did. I don't know if
both things can be true at the same time. But
I don't recommend children to get married when they're twenty,
but here we are. Yes, we got married when we
were twenty and had a very small wedding which is
(05:00):
our family, and then a big reception with our massive
families back at home, and then like a month later,
we moved to Hawaii to start the rest of our lives.
And it was just a blast, I mean, to be newlyweds,
and I did my undergrad at University of Hawaii, and
I think it was just the perfect beginning, just to
get away from you know, all of the we were
kids in Seattle, and Seattle can be real small towny.
(05:22):
To start in a new place like Hawaii, it was
just it was magic. That was the best decision we
ever made.
Speaker 1 (05:28):
Had you been to Hawaii before.
Speaker 4 (05:31):
You know, my grandma was a genius and when she retired,
she lived in the Seattle winters in Honolulu and lived
like spring and summer here, so they call them snowbirds.
And so I had gone over back and forth when
I was like a little kid to see my grandma.
We would spend Christmas there every once in a while.
And there's a great deal, like we paid in state
(05:52):
tuition if you live on the West Coast. And so
I was not a super smart student back in the day.
I just didn't care that much about school. I guess
I was too busy, you know, being in love with
my high school boyfriend or something. But I could like
move to eastern Washington and go to college or move
to Hawaii, and so I chose Hawaii. So I'm a, yeah,
(06:13):
I'm a I love being near the water's brilliant.
Speaker 1 (06:16):
You're gonna have to be our tour guide. Yeah, that's
our fiftieth state.
Speaker 2 (06:20):
We know you love to travel, and we love to travel,
and we've done a lot of it for work, but
we do a lot of it for pleasure.
Speaker 3 (06:25):
And I've been to forty nine of the fifty states.
Speaker 2 (06:28):
Jake's been to forty eight of the fifty states, and
he still lacks Alaska, and neither of us have been
to Hawaii.
Speaker 3 (06:35):
So we're that's going to be our fiftieth.
Speaker 4 (06:37):
Oh my gosh, okay, way to like bring it home though,
like right, I mean the well done, Yes this is
I know this is not that podcast, but I can.
I'll send you a whole, like aggressively long list of
things to do in places to go.
Speaker 2 (06:51):
It's beautifect Well, we're just going to talk you into
coming with us.
Speaker 4 (06:54):
Yeah, I don't need to be talked into it. I don't.
I don't listen in.
Speaker 1 (06:59):
So it's done. It's done. You just got to figure
out when we're going to squeeze a laskin.
Speaker 2 (07:05):
So married at twenty and then when did y'all decide
to grow your family.
Speaker 4 (07:10):
I think we were twenty five when we decided to
have a baby. And again, right, we're kind of West
Coast folks, and that feels so young now that I
think about it, But I think because we've been together
for so long, it just didn't feel it didn't feel wilder,
you know, silly to have a kid. And so we were,
you know, I think, as prepared as you can be,
(07:32):
but like, you know, kind of poor. We were living
in the Bay Area, just kind of living the lives
of like people in our mid twenties in Oakland, California,
and just decided to have a baby, and I had
the best pregnancy and all these friends that didn't have
any kids, and so we just like I had this
whole crew of folks that just went on food adventures
(07:54):
with me and ate all the fun things that I
wanted to eat, and it wasn't really I felt so
energized and excited when we were preparing for Mari to come.
It was like such a special time waiting to meet her.
And so I remember it's all intertwined in, you know,
being twenty five, living in the Bay Area, having these
fantastic friends, just kind of waiting for this little person
(08:15):
to come join our crew.
Speaker 2 (08:16):
And it's so funny because parents always say that, oh,
we're waiting for the right time to have It's never
the right time, right.
Speaker 3 (08:22):
What were y'all doing professionally at that time?
Speaker 4 (08:25):
So I had a really cool job at the time.
I was working for a small nonprofit adoption agency, which
was like my first big kid job out of college.
And I got to help look for families adoptive families
for kids in foster care for the state of California.
And I've adopted from foster care, and so it was
(08:46):
super meaningful and full circle. And Jamie was working for
like the Duty Free company, so that was his job
in Hawaii, and transferred to San Francisco and was like
a you know, liquor and wine manager, and you know,
they weren't like our forever jobs, but they were good enough.
And so we were, you know, just kind of chugging
along with our jobs and living our best life in
(09:08):
the Bay Area. I can't stress that enough fun place
to be when you're young.
Speaker 3 (09:12):
Yeah, no kidding, or when you're old, or pretty much any.
Speaker 4 (09:16):
Time anytime, yeah, anytime.
Speaker 2 (09:18):
Yeah, So this beautiful bundle of joy comes along.
Speaker 3 (09:22):
Tell us about Mari.
Speaker 4 (09:24):
Oh my gosh. She came into the world like with
such purpose. And you hear when you're pregnant that your
kids are just going to be who they are. You
don't really have much control. She came into the world
with clarity and purpose, even as like a newborn. We
remember looking at her and being like she's like staring
us down, like she was just super present in the world,
(09:47):
and it was so exciting to just get to know her.
So she came on her own time, right when she
wanted to. And you know, I stayed at home for
like twenty two hours and had labored at home, and
then she came two hours later and she just unfolded
like a flower and just kind of looked at everybody,
And I remember that so clearly, just her dark eyes
(10:07):
just kind of checking us out. I tell this funny
story because she loved to hear about being born later on,
so she was super hyped to know how painful it
was and how like she was, you know, like she
she wanted me to tell her this story all the time.
But all of our friends came to the hospital and
(10:28):
were waiting, and I didn't know it either, And so
when she was born, there was all these folks that
were waiting to meet her, and so one after the
other they came in and helped her and snuggled her.
And later on in life, when she learned about like
the Christmas story and like Baby Jesus, she learned about
it and she said, oh, Baby Jesus was just like me.
Everybody was waiting to meet Baby Jesus suit just like me.
(10:48):
And I was like, like, you might have it like
a little bit backwards, but you know, that's one interpretation
of the story. But she just was captivating from the
time that she arrived and I know I'm biased as
her parent, but she just had a special energy.
Speaker 1 (11:06):
I'm curious to know the name Maury, where did that
come from?
Speaker 4 (11:11):
So her full name is Marielle, and we called her
mari for short. My mom's name is Mary Ellen, and
so it's kind of an interpretation of a few family names.
But she liked to be called Mariy for short, and
we nicknamed her that, and then she kind of embraced
it when she was able to tell people what she
wanted to be called, which she wasn't shy about.
Speaker 2 (11:31):
She sounds like, I mean, not just a bundle of joy,
but just like you said, she came in with clarity
and purpose, just such a presence.
Speaker 4 (11:40):
That's yeahful. She certainly made her presence known even before
she could talk. She just had a way of kind
of peering into people's eyes and demanding their attention, even
when she was just a tiny little thing.
Speaker 3 (11:52):
So how did she develop as she was growing older?
Speaker 4 (11:56):
She was ahead of all of her milestones for a while.
And you know, you like pretend like that's not exciting,
but it is. She rolled over really early and we
were kind of proud of that. And I remember noticing
one day that she couldn't roll over anymore. She was trying,
but she couldn't. And you know, I'm a little bit
(12:18):
of a like a nervous nelly or there's you know,
a million ways to describe it. I remember just noting
that and being really freaked out by that, and so
taking her to her pediatrician, who I think tried not
to freak us out but wanted to do for their
workup and have her be seen by a physical therapists.
It could be a range of like absolutely nothing to
something horrifying, and so we you know, started on kind
(12:40):
of a medical process totally unexpectedly, just when we noticed
that she couldn't do the things that she wanted to
do anymore. I think I was a little naive even
going into that, of how scary her future could become.
Speaker 2 (12:53):
I think that's completely natural to be the nervous nelly,
and especially first time mom.
Speaker 1 (12:58):
From the mall perspective, I think that's a first time
parent thing. You know. I think you're just like, like
I told you, like I would fall asleep sleeping at
the end of the bed when Jackson was you know,
because he was in the crip thing right at the
end of the bed. And I would just like just
watch them breathe and be at the end of the
(13:20):
bed and then I'd wake up like that, Yeah, I
think it's normal. There are thing they're ours, you know.
Just like you said, it's never a perfect time. You
think you could do everything in the world and think
that you're like okay, I'm ready, so ready, and then
that little human being blesses the world and you're like,
oh my god.
Speaker 4 (13:41):
Yep, yep, everyone's the best parent in the world, like
before they have children. It's this is a really interesting vibe,
like you know all, you have, all the answers, you
know everything, and then you have a kid and you're like, okay,
I am I am humbled. I know nothing at all.
Speaker 1 (13:55):
Yeah, no doubt about it.
Speaker 2 (13:57):
Throw all the books, all the guides away, let me
just do this thing. So when the docs started doing
the research and started running some of the tests, what
did you discover?
Speaker 4 (14:10):
So we were called into an appointment and met with
her doctors who told us that she was diagnosed with
a disease called spinal muscular atrophy and there's kind of
a range of severity and it's one of those things
that catching it earlier is the opposite of good. It's terrible.
The earlier you find it, the more severe it is.
(14:31):
It's when the symptoms present. I remember bits and pieces
of the conversation, not that much, just because you know,
everything kind of goes dark when you're confronted with something horrible.
I remember him telling us like, there's nothing you can do,
like take her home and love her because she's not
going to live a long life. We lived in the
(14:52):
Bay Area, we didn't have a car, and I remember like,
instead of taking the bus back to our apartment like
we always did, my husband and I we walked all
the way home, just like, you know, kind of breathless,
because it wasn't only that she had this disease that
we didn't know anything about, but it was that there
was no hope that was kind of put in front
of us when we learned that there wasn't a thing
(15:13):
that we could do or a medicine that we could take.
It was just this is going to be awful. She's
gonna die. There's nothing we can do about it. It
just took my breath away and it didn't make sense
because besides not being able to roll over anymore, she
wasn't sick right. There wasn't like an illness in front
of us. So she was just this like happy little
five and a half or six month old baby doing
(15:35):
what five and a half and six month old babies do.
There was just this really intense dichotomy between like what
we heard and what we were looking at, and I
just it's hard to make sense of those two realities
at the same time, because you know, kids don't stop, right,
You got to like get up and do the thing
the next day. And so it just didn't match up
(15:56):
to where we were emotionally, which I think in reflection
was a good thing maybe, but I think it made
it hard in real time for sure.
Speaker 2 (16:04):
I Mean, I'm sitting here thinking like, how do you
get this devastating news that you've just received and then
you have to go on parenting right, acting like nothing's wrong,
acting like everything's fine.
Speaker 3 (16:15):
How did you cope?
Speaker 4 (16:17):
I'm lucky to be surrounded by a lot of incredible people,
and so I remember talking to my mom and I
remember my friends coming over. I think she forced us
to cope. She was just like the embodiment of joy,
and so I just in reflection, had this like pit
(16:39):
in my stomach for the longest time. But I think
there was a part of me that just tried to
set aside all the things that were to come, because
you know, I had to get up, my husband had
to go to work. I had a baby that wanted
to engage, and I think demanded that of us. And
so we really just tried to do the things that
we were supposed to do, right, take her to story
(17:00):
time and you know, get outside and read books. And
I think early on got to a place where we
were really going to soak in our time with her,
right that was the easiest thing to come to, was, well,
if she's gonna die, then we have to love her extra,
we have to do all the things extra. And so
we really did that and started celebrating her birthday every
(17:22):
month instead of every year, just because we wanted to
have celebrations, right, and she deserved to be celebrated, And
so we just decided to start doing those things and
do them all the time, because I think that was
the only thing that we could control, right, was how
we lived with her. Everything else was just happening, and
so we're like, damn it, if everything else is happening
(17:43):
and we have no control over that, then we're going
to have some fun right now. And it wasn't easy, right,
it wasn't perfect all the time, but it was so
really a mission.
Speaker 1 (17:52):
You and Jamie clearly decided, Hey, let's grab a hold
of our grit grace. We got to keep putting one
foot in front of the other because this beautiful, precious
angel doesn't know about this devastating news. And I think
(18:13):
the doctor what sound advice? Go love her all the way,
you know, And then you guys knowing, hey, what can
we do? Because how much do all of us We
were just talking about that this week. We forget to
celebrate the small things like we forget, maybe not even
so much forget, but it's like, eh, it's just a
(18:34):
small thing, like we didn't win the lottery, so it's
not the big of a deal, or like you know
what I mean. And you guys were intentional about it.
That had to play a role in having the internal
fortitude to keep going next step. And I yeah, there's
no manual on how to do that, Like there's no
class you can take to give you the perseverance of
(18:58):
perspective you need to do the loving the best you can.
I think it was instinctual and you just you guys
leaned in and just ran with it. And clearly Mari
had no shortage of love.
Speaker 4 (19:13):
Clearly, Yeah, we talk about that right, how her life
was hard in so many ways, and but that her
experience was to be surrounded by like a huge community
of people that loved her. Like she never met a stranger.
You know. We'd be like on the bus in San
Francisco and there'd be some really pissed off looking guy
and she'd just be like smiling at him, you know,
(19:36):
like like on the bus and I just say, sir,
I'm sorry. She's gonna keep doing this until just like
give her a little something and show me you alone.
But she just really she had a way of kind
of demanding and captivating folks. And I think the thing
that happened that, you know, along the way, was she
developed the language skills very early. And in reflection, you know,
(19:58):
we you kind of make sense of things, you know,
as you look back, it's like she sure had a
lot of things to say, and so she found the
ability to communicate so early, and so it feels like
we knew her for a really long time because she
started speaking when she was like twelve and a half months,
Oh wow. And then you know, very soon after started
like telling people what to do, and you know, and
(20:20):
I love that about her, and so I think those
things all happened, and you couldn't help but love her
little spirit just because she had this way of forcing
you to even when things were hard. I really give
all the credit to her. I feel like I learned
how to navigate this from her, which feels like a
lot of pressure to put on a baby, but the
(20:41):
way that she you know, she started her day and
she forced us to get up and laugh and entertain her.
And so even the days where I feel like we
wanted to just hide under the covers, right, that wasn't
her agenda for the day. And so we kind of
learned how to live in those dual realities, I think,
super early, and it was an incredible gift that she
gave us.
Speaker 2 (21:00):
Was absolutely What did the next few years look like?
Were their doctor's appointments, were their hospital visits.
Speaker 4 (21:07):
At the time, there wasn't a treatment, and like any parent,
I didn't believe them. So we went to multiple hospitals
and saw all the specialists and the answers you know,
really were clear with the disease, it's you lose muscle function,
and so it wasn't kind of this rapid thing that happened.
But you know, when she got a cold, the cold
(21:29):
just was worse for her. So her first cold turned
into a pneumonia, and then after that her next cold,
her lungs collapsed and she was in the ICU. Because
people look at a kid that can't walk or whatever,
and they focus on that because that's important to us.
But you use muscles to like cough and to swallow,
and they're more important for those things. And so she
(21:52):
got sicker when she got sick, and they started getting
closer together. The first time she had a like I said,
it was aneumonia, but we could stay at home. And
then she was in the hospital, and then it was
the ICU, and then it was the ICU for a
couple of weeks. And in the beginning it was hard,
but it felt like these kind of sporadic things that
(22:14):
were happening. But eventually they started getting closer and closer together.
And so when she was eighteen months, it was right
after she had a feeding to put in, we relocated
back to Seattle, just because despite our fabulous life in
the Bay Area. We just needed to be with family,
and so we moved into a duplex next door to
(22:34):
my parents so that we could have extra support. And
so that was a lifeline, I think for all of
us to have Grandma and Grandpa next door. And that
was just like her safe haven. So we didn't allow
any medical equipment, nothing was allowed at Grandma's house, just
so that she could have one place in the world
that was hers. But the illnesses became frequent, and her
(22:55):
ability to really bounce back to one hundred, you know,
I think lessened over time. It just kept getting closer
and closer together and worse and worse.
Speaker 2 (23:05):
Oh and as a child, I mean, as such a
young child, the hospital visits like I hate going to
the dentist, you know, for years of having cavities and
stuff like, I can't imagine for a baby to have
to go into the hospital. Did she react at all
when you had to go on those trips.
Speaker 4 (23:20):
Yeah, you know, I think that was one of the
hardest things was she developed like a real terror of
the hospitals and of doctors, and so she would have
like little babies, right, it's just in a place where
you know, you can't intellectualize with a child why they
have to do all these things. And so she would
(23:41):
have panic attacks even when we would drive by the hospital.
And so that was another part of it that I
think made us really kind of take pause as parents.
And you know, even when she was in the hospital,
she just coped in just the most tragic ways. Right
like one time she was sick and had to be intobating,
she had a breathing tubein because she just couldn't get better.
(24:03):
The only thing that made her feel better is if
she could touch our faces. And so like my husband
and I just like rotated for days and days and
days just hovering over her little bed and she would
touch our noses. And you know, I think there comes
a point where you begin wondering, like what are we doing?
Where does this go? And I think her experience and
her reaction it really made us rethink kind of everything
(24:26):
that we were doing because she was living it right,
and her experience matters. I think it's easy to set
that aside when you want your kid to be around forever,
but we just we were confronted with it in a
way that we couldn't ignore.
Speaker 2 (24:39):
Even in her illness, she was guiding you right, you
said earlier that she's the one that guided you to
get through those tough days and the reality of her situation.
But then even when she was sickest, she continued to
guide you. What did you decide to do.
Speaker 4 (24:54):
During one of her like last hospital stays, she was
real pissed about it, and you know, we validated that,
like she could be angry. And we were leaving the hospital,
and I work at children's hospital now, and so I
know when kids leave, we blow bubbles and we wave
and try to make it like a kid friendly place.
And she was pissed and she said like, goodbye, stupid hospital,
(25:16):
like I'm never coming back here again. When I remember
kind of doing the mom thing and having a conversation
with her about I hope you don't have to come back,
but you probably will and I know you hate it,
but let's go home, and she was like, no, I'm
never coming back here again. And early on, when Mari was,
you know, first diagnosed, my husband and I made a
promise to each other that we were never going to
(25:38):
make her suffer. To prevent ours, I think it's easy
to prioritize the avoidance of that horrible thing that's coming
and so after she called us to the carpet, like
she often did, we talked to the team that was
taking care of her, and they were a palliative care
team that helped her have quality of life like in
(25:58):
the middle as a part of her illness and prioritized
not just doing all the things that were possible, but
making sure that she had joy and that she had play,
and that she had experiences and she had support, so
they would come to our house. So after that last
hospital's stay, after she when she became ill again, we
decided not to take her back to the hospital, and
(26:20):
the hospital came to us. She was put on the
hospice during her last illness, and we stayed home instead
of going to the hospital, and her providers came to
our house and helped make sure that she had all
of the things that she needed to be comfortable and
that we had all the resources we needed as parents
to support her through that illness.
Speaker 2 (26:43):
That's beautiful that you were able to do that and
keep her comfortable in her final days.
Speaker 3 (26:49):
So she celebrated her third birthday.
Speaker 4 (26:53):
Yeah, she celebrated her third birthday right before Christmas, and
we had a really fun Christmas to make a Way
Foundation set her up with a special like one on
one visit with Santa Claus, and she was very demanding
with Santa Claus that year, which is also a very
funny story. She we like went to meet Santa and
she wanted a microphone. So she did like the whole
(27:15):
meet and greet with Santa, and we were getting ready
to leave and she was like, I'm not leaving here
without my microphone and we were like, oh, we didn't
tell you. Santa is going to come bring you. Anyways,
it was a whole thing, but we saw the Nutcracker.
We did all the things. And so when January came,
she got sick again and she was really in and
out of it for a few days. And she woke
(27:37):
up and she looked at me and my husband and
she said, mom, I'm going to be a butterfly. I
want to be a butterfly and fly into the sky,
like won't that be nice? And she died the next morning.
She didn't wake up again. And so that night, you know,
we told her the story of when she was born
and how awful it was, because she loved that so much,
and you know, we read stories and she was able
(28:01):
to die where she wanted to be at home with
the dog in the bed and without all the machines
and all the beeping. It was like the hardest thing ever.
And I'm so grateful that we had the resources and
the support really to make sure that she was able
to die in the way that she wanted to die,
(28:21):
and that she wasn't surrounded by the thing that terrified
her the most. And so to have the community come
and be with her and us in that way, it
just takes my breath away to remember those moments, and
I'm so grateful that she had that and we had that.
Speaker 1 (28:40):
You know, usually it's me filling space while Ash is
like collecting herself. And I gotta tell you, on this one,
it was like, I don't tear up get emotional often,
and it's not because I mean, it's not because of
the marine thing and all that crap. I think it's
just a thing. But yeah, I was fighting it on
that one. Yeah, I gotta tell you, like, it's what
(29:02):
a blessing that it was on her terms, you know,
because we don't always get that. I mean, you work
in a hospital, you know, for a fact not always
the case. And the fact that you and Jamie and
your family in the community. You were able to find
beauty in something that was just so tragic. Is such
(29:25):
a rarity, but I think that's why you have such
a magnetic soul, and I can only imagine Jamie's the
same way.
Speaker 2 (29:31):
It's so beautiful, And like you said, I mean the
fact that she was there bringing people together in her
final moments. What was life like for you after that?
Speaker 4 (29:43):
That first year is kind of body Honestly, I don't
remember all of it. But I went back to work
like three months after she died because I realized I
couldn't just be at home. I just needed something else
to think about. And you know, we kind of trudged
along in the beginning and just had a lot of
(30:05):
folks that were looking out for us. And we were
able to go to Hawaii together with my parents, which
was a place that she had been to and we
loved obviously, and so we just tried to figure out how,
you know, to put one foot in front of the other.
It feels like people are like, I don't know how
you did it. I don't know what the other option was. Right,
we were still here and she wasn't, and we had
(30:28):
to learn how to live without her. I ended up
applying to go to grad school and the following year
went back to get my master's in social work because
that was kind of my journey anyways, and it felt
like the right time. And Jamie always wanted to be
a firefighter and was kind of dabbling, and he really
committed to that process too, and was really actively trying
(30:50):
to get hired with the Seattle Fire Department. And so
we just focused on work and on you know, just
those kind of things because we had to. And I
think it was the only thing we kind of knew
how to do, and it was the only thing that
was like future oriented that I think we could really
hold on to. It was hard to look out into
(31:10):
the future and think about how long life was going
to be without Mari, even though we both knew that
we wanted to live it, it just felt too hard.
Speaker 2 (31:19):
What a beautiful thing that you both chose fields where
you're caring for people, where you're taking care of people.
Speaker 1 (31:26):
If like guys and gals like me, you know, that
served in the military and had to go abroad, and
like we couldn't do stuff that we do without knowing
there's people like Jamie and you to take care of
ours here while we're there. We're literally we're all battened
for the same team when it comes to taking care
(31:47):
of our loved ones. And so what you guys do
is admirable and comes with its own challenges and struggles.
I mean, they're not the easiest jobs in the world.
Just like you said, you didn't have a in the Marines,
you'd call it hip pocket class. Like, we didn't get
a hip pocket class for whatever. Clearly you guys didn't
have that. How do you prepare for that? No idea,
We're just doing it.
Speaker 4 (32:09):
Yeah, yeah, I think that's exactly what it was, right.
We just were like, we have to figure it out.
And you know, Mari, like I said, she was this
tiny person, but she had a really like deep and
generous soul. And we talked a lot about gratitude with her,
just because I think it's important and even in the
context of like how hard so many things were. I
(32:31):
think we had a lot of conversations as a family
about how like fortunate we are to have so much
and to have so many people that love us. And
she didn't get in trouble often. But one of the
things that I remember so deeply is that when she
was being naughty, you know, or something, you know, we
tell her like, Mari, you're not being grateful right now,
(32:52):
and she would cry. She'd go, I want to be
grateful more. I want to be grateful, and she would cry. Right.
She just thought was like the worst the thing for
her and the birthday that she had before she died,
she didn't get to go to her party because she
had to go to the hospital that morning she had
gotten sick, and it just felt like a really cruel outcome.
(33:12):
But this was her third birthday and that winter we
had talked about people that were experiencing homelessness, and she
asked me if we could buy houses for all of
the families, and you know, I told her that we couldn't.
She then said, then can we at least buy the mittens?
And so for her birthday we asked people to bring
mittens and warm items to give to our community. And
(33:35):
it's like, I don't know a lot of children that
ask for that, right, And so she just had this
like I know, she was only three, just barely, but
she had this like deep spirit that I think forced
everybody to be just a little bit better. And so
when Jamie and I were figuring out what we were
going to do and how we were going to do it.
(33:56):
Being in service to our community was already a value
that we had, but it just felt like we had
to do right by Mari in some way, and it
didn't need to be you know, having a foundation in
her name or whatever. You know, people do this in
a lot of different ways, but it felt like if
we were going to do one thing to honor her
(34:17):
at the time, it really felt like we needed to
live with that spirit and so our organic next steps
we already were kind of in the fields that we
wanted to be in, and so it just felt not
easy but so important to kind of fulfill those missions
and to live in service and work in service of
our communities in the way that we do differently and
(34:38):
sometimes they overlap, but we.
Speaker 3 (34:41):
Greatly appreciate that.
Speaker 2 (34:42):
And thank you for being such amazing, strong parents who
teach gratitude. Sometimes it's so hard to do to find
that space. I can completely relate todriw. I want to
be grateful. I get it, I get it, but sometimes
it's easier said than done. In taking care of the
two of you, you kind of found a love and travel.
Speaker 3 (35:04):
What do you love so much about travel? What's your
favorite place you've been?
Speaker 1 (35:08):
Oh?
Speaker 4 (35:08):
Man, oh, you know, I have a hard time identifying
a favorite place. But last year we took a sailboat
down the Nile and that was magical and incredible. It
is like a part of gratitude practice. And I just
feel like my capacity for love and compassion and empathy
(35:29):
and joy grows like exponentially every single time I go somewhere.
The world is kind and people are kind, and I
mean the number of people that have invited me back
to their house for tea, or brought me home for dinner,
or helped us along our way. It just is this
way of remembering that the world is full of goodness
and also in the sadness that we've experienced, we are
(35:51):
not unique in that way, right that the people are
experiencing loss and figuring out how to keep it pushing
all over the world. And so there is something really
incredible about just opening up my soul and my heart
to joy and to beauty and sometimes the hard things.
And Jamie is really the same. So we just are
(36:11):
always planning an adventure because we just pick up memories
and friends and loved ones and stories and different ways
of feeling grateful with every single place, but Egypt comes
to the top of the mind because it just was like
live in I don't know, it just felt fake. It
was incredible, not just because of the sites, the people
were were wonderful, right, And so those are the memories
(36:34):
that I think I cherish the most.
Speaker 1 (36:36):
By the way you just described travel, I'm pretty sure
you and Ashley were separated at birth. Thank you. I'm serious,
Like it sounds almost verbatim how she would describe it,
because I mean, I love it and love seeing the
new places and all that, but I mean she could,
she would do it every week of the year if she.
Speaker 3 (36:57):
Could, just getting to see how other people live.
Speaker 2 (36:59):
Really, our little bubble that we live in is just
that it's a little bubble. There's a great, big world
out there, full of beautiful people that have such different
life experiences than us, and it just it's a perspective
thing for me. I've always, since I was a child,
wanted to broaden my horizons and see the world and
meet all the people.
Speaker 3 (37:19):
My wonderlust, that's what I call it, because I love
to wonder.
Speaker 1 (37:22):
I gotta ask Ma after the journey you and Jamie
have been through. What's your life's mission at this point?
Speaker 4 (37:30):
That is not a heavy or deep question at all.
Speaker 1 (37:34):
I'm a very surface level kind of guy, you know.
Speaker 4 (37:38):
I think there's a lot of versions of this, but
right now I think my mission is honestly to just
live with as much joy and as much gratitude as
robustly as Marie taught me. And that's Jamie too, And
it looks different for us right in different ways at work,
(38:00):
you know, we're different versions of ourselves. And he's so
focused on the children in our community and making sure
that they have a space at his station and that
they feel seen, you know. And it's in travel, it's
finding the corners of the world that maybe most call
us and connecting with the people there. And so it
really is just to grab life by the horns and
(38:21):
to live with gratitude and joy and purpose and hope
as much as we can. And it's not that it
doesn't get hard, right, That life gets hard sometimes, but
it's pretty easy I think at this point for us
to find ourselves back towards the center and to be
centered again. Because of all the things that we've lived together, right,
we're stronger than we ever thought we could be. And
(38:43):
Marie is with us in a way that is different
than a few years ago when we were grieving parents,
And I'm grateful for that part of the journey too,
of just the way that I know that she's here
and I feel her, and the way that I'm reminded
of how wonderful she is that I didn't think was
possible kind of earlier on in my story. So we're
just living with joy and gratitude all the time.
Speaker 3 (39:06):
Thank you, Maya Scott. Thank you so much for your perspective.
Speaker 2 (39:09):
Thank you for your love and your gratitude and your
courage to come and tell this story today. It's just
the perspective we need to continue to go forward in
our days, what days we're given right and just honoring
and remembering your beautiful daughter and knowing that there's beautiful
butterflies flying around all over the place. And I just
(39:31):
truly appreciate the joy that you've given me and given
us today.
Speaker 4 (39:35):
Thank you for giving me an opportunity to share a
little bit of Marie's story. She really magic and body.
So I'm grateful that more people will be able to
know that.
Speaker 1 (39:45):
You and Jamie both even though you know, we didn't
have the pleasure of meeting him yet, but we'll get
to hang out with him and when we all go
to Hawaii. But I got to tell you, I happen
to know a lot of really tough, convicted people. It's
such a gift to get to meet someone like you
because you're those things, but your compassion and your gratitude
(40:08):
and your joy and your love far outshines those things.
And so you're a very special, unique person. And I
want you to know that this particular episode made me
a better person. So thank you for that.
Speaker 4 (40:23):
Oh, thank you. Yeah, Mari really is really the best teacher.
So I'm happy to be the person to spread that message.
And yeah, I'm grateful.
Speaker 3 (40:33):
Thank you so much for listening.
Speaker 2 (40:35):
If this episode touched you today, please share it and
be part of making someone's day better.
Speaker 1 (40:40):
Put on your bad ass capes like Mari Maya and
Jamie and go be great today. And remember you can't
do epic stuff without epic people. Thank you for listening
to the good Stuff.
Speaker 3 (40:54):
The Good Stuff is executive produced.
Speaker 2 (40:56):
By Ashley Shick, Jacob Shick, Leah Pictures, and you Code Media.
Posted by Ashley Shick and Jacob Schick, Produced by Nick
Cassellini and Ryan Counts House post production supervisor Will Tindy.
Music editing by Will haywood Smith, edited by Mike Robinson,
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