July 21, 2025 • 40 mins
When Megan Schomer learned her newborn son Corwyn had a combination of three ultra-rare brain malformations, her world was forever changed. Despite no clear diagnosis and no treatment options, Megan and her family chose to live fully, making the most of every moment of Corwyn’s short life. In this deeply moving episode, Megan opens up about the medical journey that followed — one filled with constant seizures, around-the-clock care, and an unshakable commitment to creating joy, even in the face of heartbreaking realities.
After Corwyn passed away at just four and a half years old, Megan transformed her grief into purpose. She founded Rays for Rare, a nonprofit that provides meaningful, non-diagnosis-specific support for families caring for medically fragile children — because most of that care doesn’t happen in hospitals, but in homes. From house cleaning and lawn care to emotional support groups and sibling events, Rays for Rare shines light into the lives of families often overlooked by traditional systems.
Today, Megan leads the organization full time, serving over 200 families across the Treasure Valley, and raising awareness for pediatric palliative and hospice care. She’s received numerous honors for her work, but her impact goes far beyond awards — it lives in the stories of families who finally feel seen, supported, and less alone.
Tune in as Megan shares her path from real estate to nonprofit leadership, what it means to choose quality of life over quantity, and how small, compassionate gestures can radically change lives. Whether you’re looking to understand the world of medically complex parenting or find a way to help, this conversation is both heart-wrenching and hope-filled.
Learn more, get involved, or donate at raiseforrare.org.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Today on the Ever Onward podcast we have Megan
Shomer.
She is the CEO of Raise forRare.
Following the death of her sonCorwin, she started a nonprofit
that helps families here in theTreasure Valley with children
with severe medical illnesses.
It's an incredible nonprofitand story to tell and looking
forward to share that today.
Megan welcome.
Speaker 2 (00:31):
Thank you.
Speaker 1 (00:31):
This should be fun.
We were just talking about bothat the concert last night.
Speaker 2 (00:36):
Yes.
Speaker 1 (00:37):
Amazing, wasn't it?
It?
Speaker 2 (00:38):
was amazing.
It was a really good show.
Speaker 1 (00:40):
It's funny, I've seen him.
This will be my third time.
Oh wow, I've seen him.
This is my third time.
Speaker 2 (00:47):
Oh, wow.
Speaker 1 (00:47):
Just for different circumstances.
I saw him in Louisiana.
My daughter-in-law was going tolaw school at LSU and he played
at New Orleans and he playedback-to-back with Guns N' Roses.
Speaker 2 (01:01):
Oh wow, I bet that was an epic show.
Speaker 1 (01:05):
In a torrential rainstorm.
Right, remember that, maddie?
Oh, you weren't there.
Was that pre-Maddie?
Oh yeah, so that was a whileago, but this was good.
And then Jelly Roll was great.
That stadium was packed.
It was really awesome.
I know that's part of the planis to do more of those things
and really use the stadium more.
(01:26):
It's such a beautiful setting.
Speaker 2 (01:29):
It's a great space with a beautiful backdrop of the
mountains and the hills.
It was really really cool.
Speaker 1 (01:36):
Well, thank you for coming on today.
We've never met, so this willbe great.
But I've been reading about allthe things you've been doing
and I'm not even sure how we gotconnected to get you on.
Someone called and said youhave got to talk to Megan.
That's a big deal.
And I said I looked it up I'mlike, yeah, we've got to get on
the podcast.
Speaker 2 (01:52):
Well, thank you for having me.
Yeah, I haven't really putmyself out there that much, but
I know that it's to further ourwork, and so that's what I want
to do.
Speaker 1 (02:02):
That's great, yeah, so tell us a little bit about
you.
Speaker 2 (02:07):
Third generation, idahoan, born and raised.
I was born at St Luke'sdowntown, so been here my whole
life and I was in real estatetop producer.
Loved that, and then, in 2012,I had my second son, and from in
utero I knew something wasgoing on with him, and we didn't
(02:27):
know what it was, though, um,so that was a long journey.
Your first child was healthyhealthy, typical um born in 2010
.
So, um, 18 months later, um, Iwas pregnant with his brother.
While they're 18 months apart,um, and in utero, they noticed
when I went in for my genderreveal that something was going
on with his brain.
(02:48):
Ventricles were dilated, justthings weren't right.
But they didn't know what itwas.
So I was highly monitored, wentthrough the pregnancy, highly
monitored and when he was born,we didn't know if he would be
born because they didn't knowwhat we were looking at.
His scans were sent worldwidefrom an MRI in utero and we're
(03:08):
in the NICU, had an immediatereferral to Seattle Children's.
Still weren't sure what wasgoing on, but they knew based on
what was going on with hisbrain, he was going to have
epilepsy, seizures, things likethat.
They just had thought it wouldbe probably closer to nine
months to a year before thatstarted and they started the day
we left the NICU and so sent usinto treatment immediately of
(03:31):
managing symptoms and referralsto neurology and all the
specialists down here.
And while we waited for thatSeattle children's referral
because it was he was born inand that Seattle children's
referral wasn't until June ofthe next year, oh, wow.
Yeah, so we wanted to see—he's aworld-renowned specialist.
He studies rare brainmalformations in children and so
(03:53):
he was the best referral forwhat we were dealing with, and
so we managed symptoms, and theycalled us that November.
Speaker 1 (04:00):
And symptoms were seizures.
Speaker 2 (04:02):
Yeah, severe seizures , infantile spasms he had nearly
every type of seizure, so justmanaging all of that.
Speaker 1 (04:09):
It's terrifying.
Speaker 2 (04:10):
Yeah, and to have a baby doing that is just.
Speaker 1 (04:14):
I think of all the things, all the symptoms that
you know as an ER doc you wouldtake care of and honestly, like
watching your kid seize as aparent, let alone your newborn
infant child whatever go throughwhatever kind of seizure, let
alone multiple kinds.
It's just you feel so helpless.
Speaker 2 (04:36):
Oh, for sure, For sure.
Our first ER visit was to StLuke's Meridian and that was
before we understood thechildren's hospital and how
everything worked.
I mean, he was seizing and itwas uncontrollable.
So took him in there and it washour and 20 minutes and the
yard doc ended up putting hisarm around me and was like
there's nothing more we can do,just wait it out.
So, yeah, terrifying for themtoo.
They were kind of like why areyou so calm?
(04:58):
And I'm just like, well, megetting worked up.
Speaker 1 (05:01):
It's him.
It's actually a pretty goodpoint you bring up, because I
mean, I think there's sometimeswhere the providers are
terrified yeah.
You can tell too, there'snothing worse than like,
especially with like those kindsof seizures where you've kind
of done everything you can doand you've kind of maxed out
your I don't know what else todo.
(05:23):
It's a very difficult place tofind yourself as a provider.
Speaker 2 (05:27):
Well, I'm sure being the one with the answers too,
we're all looking at theprovider.
Speaker 1 (05:32):
Stop this seizure.
Speaker 2 (05:33):
Right, but nobody knows what he has and why it's
happening.
Speaker 1 (05:36):
So they didn't have any idea at that time.
Like the diagnosis, only therewas a severe brain malformation.
Speaker 2 (05:41):
They thought it was a form of lisencephaly, which
ended up not being so.
We went that November.
So he would have been fromApril to November.
They had a cancellation atSeattle Children's so we went up
there.
It was a week of Thanksgiving,snowstorm, all the things that
could go wrong went wrong.
They did an MRI up there.
All the things still couldn'tfigure it out.
(06:02):
So they said keep yourappointment in June.
So continued with symptoms,went back up that June and he
did all the tests.
Dr Dobbins was amazing.
He did all the tests and stillcouldn't figure it out.
And so, right before I left, hejust kind of threw his hands up.
He's genius and so he has tohave a handler.
He's he just kind of was like.
(06:24):
He threw his hands up and he'slike do, and so he has to have a
handler.
He's he just kind of was likehe threw his hands up and he's
like do you notice anythingdifferent from him?
And then his sibling he's likeit could be anything, please.
Just what do you know?
And I was like well, he hasthis little patch of skin that's
a little bit of a differentcolor on his forehead,
something's so minor he didn'teven see it in all these
evaluations.
And he just looked at him andhe looked at me and he goes I
know exactly what this is.
(06:45):
And he ran out of the room andhis handler's like, well, he'll
be right back, he'll be rightback, it's okay.
And he came back with a piece ofpaper.
He's like I've seen this once.
He's like it happened in 95.
She passed in 97.
So don't expect a long lifewith him.
You to live your life to thefullest.
And here's what it is.
And he said there might be morecases.
(07:06):
They're just not diagnosed in away that you can research them.
So he had a combination ofthree rare diseases.
Long story short, they put himin a natural case study and
figured out when it happened,how it happened, and essentially
it was a birthmark on the brain, but he had, instead of those
deep grooves in his brain, hisbrain was cloudy, shaped, he had
(07:26):
a form of hemimegalencephaly,but it affected his whole brain
and so there was no operationsor anything that could be done
and we were kind of just senthome with well, there's nothing
more we can do.
They took all the samples,biopsied it.
They were able to biopsy thosecells that they took from the
skin on his face and tellexactly what happened in the
brain, because those were thesame mutations.
So it was a really fascinatingprocess and terrifying at the
(07:49):
same time, but that's how we gotour answers.
So we just went home and Iwanted to live life to the
fullest.
Speaker 1 (07:55):
We traveled, so, at that point, though, they said,
hey, this is what it is, yeah,and it's so rare, you know,
mm-hmm.
To his point, what was his name?
Dr.
Speaker 2 (08:09):
Dr Dobbins.
Speaker 1 (08:10):
Dr Dobbins like to his point.
Yeah, I know what this is, butwhat was it like as a parent
being told that?
Speaker 2 (08:20):
It's devastating.
I think he told me.
The most impactful thing,though, was he held my hand.
He's like it's devastating, Ithink he told me.
The most impactful thing,though, was he held my hand is
like it's not your fault, youknow, because, as a parent,
that's what you're thinking isyou're thinking did I do
something?
Am I a factor in this?
And it wasn't anything that Idid or anything, and so, um, but
it's, it's a devastating thing.
Speaker 1 (08:39):
Isn't it powerful being told that yes?
Speaker 2 (08:42):
it is.
That's what.
That's what I mean, and I wouldencourage any provider that can
say that to say that, becausethat really does make a
difference in the parent's lifeand just understanding how these
things happen.
Speaker 1 (08:53):
So, yeah, but it's often overlooked.
Right, right, and it's a smallthing to say really Well, and
I'm glad you brought it upbecause I think I don't think
it's unintended I mean?
Speaker 2 (09:09):
I mean, I don't think you're trying to not say it,
it's just like you think.
Speaker 1 (09:10):
Well, that's of course.
The mom knows that these kindof genetic things happen as
cells divide and kids are born,and she's not going to blame
herself, right?
Why would she blame herself?
But we do you do right, and Iguess that's the other message
for people listening out thereif there's any providers is that
(09:31):
it's powerful to hear that fromsomebody.
Speaker 2 (09:34):
Yeah, just that reassurance that you didn't mess
up.
This isn't anything youintentionally did, and I think
it's just parent guilt, right.
Even if your kid is sick, youwant to do everything possible
or you think, well, maybe Ishouldn't have taken them to
that thing and they wouldn'thave gotten sick.
You just kind of run throughall the scenarios, right.
So this just takes that to awhole other level.
Speaker 1 (09:55):
Well, and you just like until you're a mom right.
Speaker 2 (09:57):
Until you're a mom.
Speaker 1 (10:07):
And you love this child more than you've loved
anything and you would doanything for it.
It's, it's a it and I like, Ithink, like.
I think dads are great too,yeah, but they're not moms right
right well, especially in thoseinfant years yes when they're
so reliant on the mother yeah,yeah
yeah, so I I've said this beforeon this podcast, but but my
daughter, when she held herfirst baby, I just whispered in
(10:27):
her ear and now you know howmuch I love you.
Right, Kind of thing.
It's not a this world, thislove that happens.
So you get the news.
Speaker 2 (10:37):
Talk through that.
Speaker 1 (10:39):
Because that's a devastating thing to hear, and
you're clearly a very strongperson, because we're going to
talk about what you're doingwith all this, but what did you
do with it?
Speaker 2 (10:50):
I looked at it as I don't know how long I have him,
so I'm going to do everything tomake his life the best it can
be.
I wanted quality over quantity,in the sense of I was willing
to take certain risks to makesure he lived a life.
I didn't want to go home andjust stay there and shut in and
not live.
And his neurologist said that'swhat most people with a
(11:11):
diagnosis like this do they justshut down.
Because I had asked him, I saidcan I take him to New York City
?
And he kind of paused and helooked up and he's like yeah,
you should go and here's a listof things you should do while
you're there.
He's like most people don't askthese questions, they want to
just shut in and kind of live ina bubble.
And I was like that is not whatI want.
I don't know how long ithappens, so I want us to have
all the memories as a familythat we can.
Speaker 1 (11:33):
That's great.
Speaker 2 (11:34):
Yeah, so that was my mission.
So we went to New York City,went to Seattle, went to
Disneyland multiple times, allwhile managing symptoms.
We had lots of visits when wewould end up at the hospital, we
were always in the PICU becausehe was such high-level care, he
was on a myriad of medicationsand there was no support groups,
there was nobody with what hehad, so it was very isolating.
(11:58):
And I tried to join some othersupport groups of one of the
rare diseases and there's somebullying in that.
They said, well, he doesn'thave exactly what we have, so no
, you can't join this group.
And I was just like, but thisjourney is similar, right?
And so all of this wasembedding in me throughout this
journey and ultimately he endedup passing away when he was four
(12:21):
and a half.
He had several bouts ofpneumonia that year and that was
finally what took him.
But he did.
We lived every day to thefullest and did everything
together, and I mean taking careof him.
I didn't have REM sleep forfive years because there aren't
good seizure monitors for whathe had, and so I basically slept
(12:43):
with my arm across him andmonitored him myself.
I could hear breathing, I couldhear movement, you know, just
feeling that as the mother,you're just like right there.
So it was like having a newbornbaby for four and a half years.
Speaker 1 (12:59):
And I know, I know I read this, but what was his name
?
Corwin Corwin.
Speaker 2 (13:02):
Yes, and I picked that because in utero, corwin
means companion of the heart,and I didn't know how long I'd
have him, but I knew he'd alwaysbe in my heart, so that's where
that came from.
Wow, yeah.
Speaker 1 (13:16):
That's awesome.
And so what about your olderson?
Speaker 2 (13:21):
Yes, his name is Maxim.
Speaker 1 (13:23):
Maxim Mm-hmm and talk about how Maxim handled this
and what was it like for Maxim.
Speaker 2 (13:30):
Well, he was 18 months older.
So for him that's all he knew.
I mean, when his brother wasborn we were just thrust into
this medical journey immediatelyand so that's all he knew.
That's his brother and that'sfine.
And so that's all I knew.
That's his brother and that'sfine.
And it did make it difficultwith other sibling friends like
friends that had siblingsbecause they would bicker and
banter and he's just like whyare you doing this?
(13:52):
Like I would never fight withmy brother, kind of a thing,
because he couldn't talk.
So I mean, corwin neverdeveloped past like that of a
three-month-old so he could cooand smile and laugh and all
those things, but he nevertalked.
He wasn't going to fight hisbrother, he wasn't going to
steal his toys or anything.
So Max just found ways toconnect to him.
They'd read books together, hewould drive his toys on him when
(14:13):
he was really little and justyou know he liked to just be in
the same room and hang out withhim and, like I said, go on all
these adventures we did.
But for him it's difficulthaving a sibling like that
because and this is somethingwe're kind of featuring for this
year I like to always find anew feature of the year, of a
(14:34):
perspective of this journey.
So this year is siblingsexperience, and siblings of
medically fragile or medicallycomplex children are called
glass children because they'reoften invisible in the family
dynamic.
They are neglected, notintentionally, but when the
sibling has such high care andsuch high needs.
Their needs are oftenoverlooked, because it's
(14:58):
literally life or death with onechild, and so the other child
sometimes just feels left out orthey don't understand that
therapies and appointmentsaren't just attention or
something fun.
They just see it, as you know,that my sibling gets to go do
all these things and I don'thave them.
So we'll get into more aboutthat, how we're helping those
(15:18):
siblings.
Speaker 1 (15:21):
And so when he passed , Maxim was.
Speaker 2 (15:25):
He was six Six.
Speaker 1 (15:27):
Mm-hmm, how did he handle that?
Speaker 2 (15:29):
He handled that.
Kids grieve differently and Ireally put a lot of thought into
how we brought him into that.
And so when his brother I meananytime he asked a question, I
felt if he could ask thequestion he deserved the answer,
the honest answer.
I mean as delicate as it couldbe, but if he can ask the
question he deserves the answer.
(15:51):
I don't want to hush him or putit away.
So we, um, from the day hisbrother passed, we actually had
him on hospice, he was at home.
It was the best, worstexperience you could have.
Um, it was a really beautifulmoment and I wouldn't trade it
for anything.
I mean to have that it's.
It's so powerful to have it onour terms, that that moment of
(16:13):
passing.
But, um, we were at home and hehad come home from school and
we knew it was eminent, and so Ihad told him.
I said I'd taken him in theother room and just said your
brother is going to be passingaway, he's not going to be here
with us, so you need to go saygoodbye.
So we went in and, yeah, I wasgoing to say I don't want to cry
, but we went in and he said hisgoodbyes and then he went with
(16:35):
my aunt when he felt he wasready and I said he won't be
here when you get back.
And so, sure enough, later thatevening he came back and he
walked right in there and helooked around and Max is very
matter of fact.
So he's just like, well, yep,you're right, he's not here.
So, okay, this is what it is.
And from there he had questionsand everything.
And then when we had the viewingthere was a whole discussion
(16:55):
about that and he became heneeded a job.
I've I saw very quickly heneeded a job.
So I was like, why don't yougive people tissues?
So he became we called himtissue enforcement, because if
he saw a tear you were getting atissue.
But it let him be involved inhis own way, right.
And so then at the service evenI had, at the casket we had,
(17:17):
were his cousins and anyone whowanted to could go write and
draw on it, and it really justallowed people to connect
through art and their messages.
But it allowed children to beinvolved in that grief process.
I feel like they often get lostin that grief process.
So giving them space to be apart of that in whatever way
that looks for them.
(17:37):
So letting them color on thecasket is letting them, you know
, grieve in their own way.
And then, at the Celebration ofLife, max had a little station
set up where everyone wrotenotes to his brother and he ran
that.
He was six but he ran thatstation and here's what you're
going to do, and it just gavehim purpose in that whole
experience and allowed him togrieve in his own way.
Speaker 1 (17:57):
So, yeah, him to grieve in his own way.
So, yeah, death, you had timebecause you kind of knew right,
right, some people don't, butit's so final and that's the
(18:18):
only way I can describe it,whether it's sudden or expected,
or a child or a teenager oryour mother or um it, you, you.
You don't have to wonder toomuch why there's so much poetry
written about it.
I mean, I like emily dickinson,like has so many different, but
it's just so indescribable thefeelings and the the kind of
loneliness and finality of it Iguess.
(18:38):
Yeah, I had a nephew that livedwith us, that you know.
It's been over 10 years now,but I still think about him.
Speaker 2 (18:47):
Yeah.
Speaker 1 (18:47):
All the time Like it's.
All the time it's with youforever.
Like he never left, but in alot of ways.
But it's just and kind of somethat gnawing pain, or loneliness
, or emptiness.
Speaker 2 (19:04):
It's an emptiness.
Speaker 1 (19:05):
Emptiness.
Speaker 2 (19:06):
Yeah.
Speaker 1 (19:06):
It just doesn't go away.
Speaker 2 (19:08):
Right, right.
Speaker 1 (19:09):
And it's probably a good thing it doesn't, because
it keeps their memory it keepstheir memory, but you just miss
them.
Right, it's that thing, youjust miss them.
Speaker 2 (19:16):
Yeah, yeah.
Speaker 1 (19:18):
You can only imagine when it's your child.
Speaker 2 (19:19):
I can't.
Speaker 1 (19:19):
I can't imagine there's some sometimes when
empathy kind of doesn't workright.
Speaker 2 (19:23):
In certain situations .
Speaker 1 (19:24):
Right yeah, Well, thanks for telling your story,
so this sparks you.
Speaker 2 (19:29):
Yes.
Speaker 1 (19:29):
Like, uh, like this was it like.
I'm going to do something aboutthis.
Speaker 2 (19:35):
So I was um at the time.
I mean the year he passed, Iwas a top producer in real
estate and so my son passed inNovember.
December, I was at my companyChristmas party and they were
kind of like, so you're going todo your own brokerage.
Now they really wanted me totake the brokerage to the next
level.
And I just I looked at him andI said, no, I, my heart is, I've
seen too many things, I've seentoo many gaps, I've seen too
(19:57):
much neglect in the community,just that this population is
really overlooked.
And I wanted to shine a lighton them and I wanted to be
practical about it.
And so I told them my idea andthey were all you know.
Several of them were just likewe're in, we want to be a board
members, let's go.
And so I mean these were people,some of them I'd worked with
(20:19):
for 15 years.
I mean I stayed at my at thatbrokerage, I'd been there over
10 years and so we were close,we had worked together for a
long time.
But they were, they were in it.
And so I was like, well, I need, I need a little time.
I mean this was one month laterand so, january, they were like
, okay, let's do it.
So they kind of nodded, youknow, pushed me along and nudged
(20:41):
me along and I had a clientthat was a nonprofit attorney
and so I reached out to her andshe's amazing, she's the
director of Idaho Legal Aid now.
Sunrise, which her name isperfect because the sun I wanted
to be light and warm to ourfamilies.
She helped us get everythingtogether and we were from his
his passing.
(21:02):
Within three months we were 501.
Speaker 1 (21:03):
Wow.
Speaker 2 (21:03):
So yeah.
Speaker 1 (21:04):
What a tremendous way to take energy and emotion and
pour it into a new passion thathelps people.
Speaker 2 (21:12):
Yeah, I don't remember who says this, but they
say when you go throughsomething like that, lose
yourself in the service ofothers, and I cannot express how
much healing comes with that.
It really does it really helps.
Speaker 1 (21:25):
It's a hard thing to and you have to be careful when
you tell people this butwhatever you're going through in
your life, whether it issomething as horrific and as
tragic as the loss of a child,versus a hard thing with a I
don't know relationship or workor whatever that it is like
(21:46):
living life arrows out and likego serve someone, go do
something, it doesn't it givesyou that purpose.
It doesn't come across well whenthey're like coming to you and
saying, hey, what should I do?
I feel horrible, it's like it'sme, me, me, and you say, go
find a way to put that energysomewhere and watch what it does
, because it'll bless you itreally does.
Speaker 2 (22:03):
You're a great example.
Speaker 1 (22:04):
This is a great story .
Thank you, so you started yournonprofit.
Speaker 2 (22:08):
Yes.
Speaker 1 (22:08):
Did it start as Raise for Rare?
Speaker 2 (22:11):
Well, I did not want this name, but this was the
first name.
The first name was Corwin'sCause.
It was named after Corwin, butI never wanted it to be about
him.
It was about these familiesgoing through this journey now,
and so we took that nameinitially, just because it made
sense.
We really had so much momentumthat we didn't want to hold back
(22:32):
on a name.
So we were like we'll figurethe name out later, let's go,
and doors just kept opening.
So we were 501.
We approached Tricidio Homesvery early on about the idea and
they were just like we're in.
They hosted our firstfundraiser.
They've been our biggestsupporter from day one to now
and so that's been an amazingrelationship to have John now
(22:53):
sits on our board and it's beenincredible the support they've
offered.
But just having all these doorsopen and I actually had went to
the local children's hospitaland I was kind of like I wanted
to meet with leadership ofhere's where things went great
with my son, but here's somethings that are lacking in the
system, so advocacy was a bigpart of this.
Speaker 1 (23:14):
How did that go?
Speaker 2 (23:15):
They actually looked at me and said nobody's ever
come to us and talked to us likethis.
Come help us do better.
And so I'm on, I think, five orsix different advisory
committees.
At that time, pediatricpalliative care did not exist in
our community, and that wassomething I was very passionate
about, because when you'redealing with all these different
specialists, pediatricpalliative care is a little
(23:36):
different than adult, and thereason it's important is because
when you're dealing with allthese different specialists, I
was put in a positionspecifically where one
specialist said he needs thisintervention or he's going to
die.
Speaker 1 (23:48):
I didn't think about that.
Speaker 2 (23:49):
And another specialist goes if you do this
intervention he's going to die.
And they put the parents in themiddle of well, what do you
want to do?
Do you want to risk his life,do you not?
Either way, it doesn't lookgood, and so palliative care
comes in and does goal settingand helps families decide what
interventions are right, with aprovider on their side, not kind
of putting them in the middleof these situations.
It helps them navigate thesystem and then, at appropriate
(24:13):
time, move them to hospice ifnecessary.
So that just didn't exist and Ijust thought as a children's
hospital.
Speaker 1 (24:19):
It's just I'm like, of course it didn't.
I mean, it just is a.
It's a unique intersection of alot of subspecialists that are,
you know, and then you are theparent, you're the advocate for
the child, so you would getstuck right in the middle of
that.
Speaker 2 (24:32):
Yes, well, and they had had kind of all these
different diagnoses.
They were kind of in their ownsilos oh yeah.
So I said, but they all wouldbenefit from this program.
And that was the aha moment oflike, oh yeah, okay, let's build
this program.
So I feel so fortunate they letme be part of the needs
assessment to interviewing thedoctors and the social workers
(24:52):
and the whole team, and we'restill heavily involved with them
and in fact the, the doctor,sits on our board and so does a
social worker.
I mean it's been an amazingfull circle relationship.
But just advocacy was a hugepart of our work.
And then I really wanted to bepractical.
So we go in and what I found wasthere's a lot of charities when
(25:14):
you have a sick child that goto the hospital and they bring
gifts and toys, and that's allgreat, but a medically complex
child is not at the hospital.
That often gifts and toys andthat's all great, but a
medically complex child is notat the hospital that often.
They're usually at home.
I mean, I had an ICU set up inmy house and rarely did we go to
the hospital, because when yougo in with one thing, you come
out with another.
So you really try to avoid itbecause you have a good place to
get sick.
(25:34):
Right, right.
So we had an ICU in our houseand I was just like everyone
takes that support to thehospital.
What about the families at home?
So I was just like, why don'twe do practical things?
So we do things like house care, lawn or house cleaning, lawn
care, snow removal reallypractical things that just take
something off their plate, andthe response has been
(25:57):
overwhelming of just how helpfulthat's been for the families.
We also have added supportgroups.
Again that community.
I looked at it as there's over8,000 rare diseases and you
could have one of them, amixture of them, it doesn't
really matter All forms ofpediatric cancer, so stuff you
learned as you went through thething, which is hey, what do you
?
Speaker 1 (26:16):
So let's talk about the term Sure, medically fragile
is a term and give us a littlemore information on that.
Speaker 2 (26:22):
So that's a child that's high acuity.
They have multiple specialists,they require therapies or
machine interventions to live.
For the most part they're totalcare kids, and so there's more
than 7,400 in our community.
Wow yeah, the need is muchlarger.
Speaker 1 (26:41):
There's 7,400 in our community.
Speaker 2 (26:43):
Wow yeah, the need is much larger.
There's 7,400?
.
Speaker 1 (26:44):
Mm-hmm.
Yeah, and what's your reach?
Speaker 2 (26:46):
We are within 30 miles of the Children's Hospital
as our main service area, andthen we do serve some rural
families.
We can't do the in-homeservices in the rural
communities, but we do send thema gas card because we know
they're coming in for all theseappointments.
Speaker 1 (27:00):
So there's 7,400 kids in the healthcare in our local
pediatric healthcare system.
Yes, Wow, there's more thanthat.
Speaker 2 (27:08):
That was last year's number.
I don't have this year's number.
What a like it's a huge need.
Um, so when we started in 17,it was, I think it was 1,850
families.
So from 2017 to 24, that's howmuch the Valley has grown with
these kids, wow, yeah.
Speaker 1 (27:30):
What do you see in common?
Like you, because you wentthrough it and now you've been.
So you've been the directorboard and it's your, your 17.
So you're eight years in.
Speaker 2 (27:40):
Yes.
Speaker 1 (27:41):
Probably seeing a lot of ways that these families
have in common, kind of, andthey're probably looking at you
going, oh, thank heavens, Likeyou, you get us.
You know what.
You know what we need.
Speaker 2 (27:51):
Yeah, in fact, a lot of the families say you know
what we need before we do.
That's been a very common thing.
That's been said to us and I'mlike, because I loved it, you
know.
So I gave up my real estatecareer in 19 to run this
completely.
Our board that was in like thefive-year plan, but the board
was like somebody needs to runthis now and you're the one we
want to do it.
Speaker 1 (28:11):
So you do it full time and talk about?
Can we go to your website?
Speaker 2 (28:15):
Yeah.
Speaker 1 (28:16):
So the URL raiseforrareorg and let's go
through some of the services youprovide and sure, and some of
those those details to get thisinformation out yeah, so the
applications on the website, um,people can just go fill it out
and it's reviewed by a medicalteam.
Speaker 2 (28:36):
But, um, if you scroll down a little bit, you
can see our.
So we do those in-home servicesthat are really practical.
Like I said that, lawn care,housekeeping we do snow removal.
Support groups have becomereally big.
We do four of those a month.
That's where the caregivers canget together and share the
highs and lows of this journey.
We used to do those virtuallybut we found in-person connects
(29:00):
a lot more Connects peoplebetter.
Yeah.
Yeah, there's something aboutduring COVID and everything.
We did those virtually, but assoon as we could have them in
person.
These families are reallyisolated, and so I think anytime
they can get out, they reallydo appreciate that opportunity.
Speaker 1 (29:14):
And you said it early on when you tried to join some
groups that were maybe notinclusive.
Right, did that help you andteach you what you would do when
you tried to join some groupsthat were maybe not inclusive?
Speaker 2 (29:20):
Right.
Speaker 1 (29:21):
Did that help you and teach you what you would do
when you're out recruiting andhow you make these feel
inclusive for folks?
Speaker 2 (29:27):
Absolutely.
Yeah, I look at it as thejourneys are different but the
feelings are similar, and so itdoesn't matter what that label
is.
You're all on a complex medicaljourney, going to the same
children's hospital, seeing thesame specialists dealing with a
lot of the same interventions,or G-tubes or CPAPs or all these
different types of cares, sothat label doesn't really matter
(29:50):
.
Speaker 1 (29:51):
Let's pause for a little bit.
So I think, for peoplelistening, I don't think.
Well, maybe, unless you've beenaround it some way which I had
the opportunity to be around ita lot, because that's where
people ended up is in the ER.
Speaker 2 (30:05):
Right.
Speaker 1 (30:06):
But you talk about this total care, right?
So a G-tube is a gastric tube,which is a permanent tube that
is placed directly into thestomach and that's where the
feedings are given on a routineschedule.
And there's a whole bunch ofscience and there's a whole
bunch surrounding feeding tubes,of how you use them, and then
(30:27):
there's the care of a feedingtube, because the feeding tube
goes straight from the stomachto the exterior.
There's a lot of problems andcomplications that come with
feeding tube.
That's the feeding tube side.
So then there's respiratorystuff and that's got its whole
thing.
And, depending on the kid andwhether their diaphragm works
and what kind of breathingsupport they need, is it at
(30:49):
night alone or is it during theday?
Do they have a tracheostomytube or not?
Are they on a ventilator or not?
I mean, there's just so muchand it's an entire thing.
Speaker 2 (30:59):
And the parents have to learn all of these things.
They can't.
There isn't a specialist foreverything I mean, as in they
have to do these cares at home.
Speaker 1 (31:08):
Yeah, so I mean it's a lot.
Speaker 2 (31:11):
It's a lot.
It's overwhelming.
Speaker 1 (31:12):
So you take each organ system right.
So you look at like GI stuffgoing in, stuff coming out.
How are you dealing with all ofthat?
You take respiratory everythingfrom.
How are they oxygenating, howare they breathing, are they
getting infections?
How to maintain all this?
And that's just the start.
Then take meds.
Speaker 2 (31:33):
Oh yeah, then the meds.
Can I mean the routine of them?
How?
Speaker 1 (31:36):
they're delivered.
When they're delivered, what doyou do as needed meds?
Speaker 2 (31:40):
Right, Rescue medications.
Rescue medications, I mean youstart going down the list and
(32:05):
oftentimes these folks havedifferent backgrounds and
capabilities that they come intothese kids with and then You're
just presented with okay,you've had a new admission in
the hospital.
Now we're adding a new, a newthing to maintain this new
symptom and a new thing and itsome families experience it all
at once.
I mean we have some kids onservices that are like non-fatal
drownings, so they go from atypical kid to total care.
So those families are learningit all at once.
Where mine was incrementally, Ilearned one thing at a time,
kind of, but some families arethrust into it all at once.
(32:26):
So it's very overwhelmingeither way, but it's a lot to
take on.
Speaker 1 (32:32):
Health care has changed.
It just has.
I mean, it's just differentthan it used to be.
I think it's a lot of pressureson healthcare.
Speaker 2 (32:43):
Yeah.
Speaker 1 (32:43):
A lot of pressure from a lot of different
directions, and so even withprimary care it's hard.
But I think one of the thingsyou've mentioned a couple times,
the so there's the nuts andbolts of taking care of a kid,
which we've talked about, butthen there is the.
It's almost the emotional andmental drain of being the one in
(33:06):
the middle.
You've brought it up a coupleof times, but you become de
facto the care provider that'scoordinating all these
specialists.
Speaker 2 (33:13):
Well, the specialists , the insurance like the DME.
So the equipment I mean you'renavigating all of that, it's
just you're navigating all of it.
Speaker 1 (33:22):
So DME is durable medical equipment.
It's a whole other thing.
So if you think abouteverything related to each organ
system has its DME required andhow all of that gets maintained
and delivered and paid for andused, and then when it goes,
when it has a problem that youhave to troubleshoot, I mean
talk about overwhelming- it is.
Speaker 2 (33:41):
It really is overwhelming, and unrelenting
right.
It never ends, 24-7, 365.
Yeah, yeah.
Speaker 1 (33:50):
Didn't sign up for it .
Speaker 2 (33:51):
No right.
Speaker 1 (33:54):
What are some of the common things you see out of the
parents in these sessions?
That one it's probably greatjust to talk about this with
others.
Your cohort.
Your cohort is a very uniquegroup of people dealing with the
same thing, but what are somethings you hear from them?
Speaker 2 (34:09):
Well, they go from everything.
It's highs and lows.
So laughing about things thatprobably the general public
would be mortified that we werelaughing about, right, just some
things that happen in thatjourney.
But then there's also ways tonavigate cares.
So just helping each other.
Oh, I found this life hack,essentially of we had one kid
(34:30):
that was vomiting, likeexcessively, I mean we're
talking the mom she said she waschanging the bed every couple
hours all night long.
And so another mom said, well,just layer blankets.
So then when this happens, pickthem up, pull it out, put them
down, you don't need to bechanging the bed.
And so it was just kind of thataha moment of I mean that just
helped her tremendously.
(34:51):
I mean just kind of thosemoments of I've lived this,
here's what worked for me, andjust imparting that wisdom onto
other families.
So that's been really helpfulto see navigating which
specialist for which treatmentand intervention did you use and
what did you like about them,what were your concerns, what
would you do differently.
So just all of thoseconversations that would go into
(35:12):
big decision-making, I mean doyou find some people are
hesitant to come to grouptherapy and engage?
Yeah, we see that for sure.
I mean we serve over 200families.
I think we have, as ofyesterday, 212 families on our
services and there's probablyonly about 20 that attend group
(35:33):
regularly.
So I mean there's a lot of roomfor more to join.
But I think time too too isanother factor the ability to
get mental health support.
We do have a licensed clinicalsocial worker that runs the
groups and has now moved intoour office and offers individual
sessions, so that's alsoallowed families to come in on
their own time.
That's great.
Speaker 1 (35:52):
Yeah, that's great.
This is going by fast.
I want to make sure we getthrough.
So you have your organization.
What are some awareness things,ways people can get involved if
they know someone that may notknow about you and what you do,
and then how can people help?
Speaker 2 (36:08):
Yeah, I would send everyone to the website.
So that has everything from ourvideo explaining our work.
You can fill out an application, you can donate directly on the
website.
You can sign up to volunteer.
We need a lot of volunteers.
We do events for the familiesas well, so we do six events for
the families as a whole andthen we do four sibling events.
We do a sibling event everyquarter just for them to have a
(36:29):
special time.
So we need volunteers for allthese events.
Between support groups, familyevents and fundraising events,
we run 60 events a year, so weneed a lot of help with the
event support.
Speaker 1 (36:43):
So anyone out there that has some extra time where
they want to volunteer for anorganization that.
I mean this is a great place togo put some time and you're
supporting the families throughdifferent events you put on, so
you probably have people alsolike to be led.
So you have pretty clear hey,volunteer, we need these things.
You put them to work right awayclear direction on what they'll
(37:05):
be doing.
That's awesome.
So there's the volunteer page,and then are there any other?
Do you have fundraisersthroughout the year or other
ways people can participate?
Speaker 2 (37:15):
Yeah, we just finished our golf scramble,
which was amazing.
Sold out record numbers thisyear, so that was awesome.
And we have cookies for a causecoming up.
That's where the local cookiecoalition gets together.
They make those beautiful,highly decorated cookies, donate
them all to us, so then all theproceeds go back to the
organization I mean there's.
Last year there was about athousand cookies, so there's a
(37:37):
lot of cookies to sell.
That's coming up on August 9thand it's at the old Intuit
buildings I don't know whattheir new name is going to be
called.
But right there in Eagle at thebottom of the hill below Chinden
.
So that's where that is.
And then we also do a SunshineGala in September, and that's at
the Chateau in Eagle as well.
Speaker 1 (37:57):
That's great, and that's at the Chateau in Eagle
as well.
That's great, that's fantastic.
Speaker 2 (38:03):
Well, this is awesome , thank you.
Speaker 1 (38:06):
Appreciate it.
And so how old's Max now?
Speaker 2 (38:09):
He is 14.
Speaker 1 (38:10):
14.
So he's grown up with theorganization.
Speaker 2 (38:13):
Oh yeah, I mean it's part of his heart.
I mean he gets in at thoseevents and he's not afraid to
touch kids in wheelchairs orhe's very comfortable with this
whole thing.
And I feel like it's continued.
That memory of his brother forhim, of this is a reality in our
world and we're not going tolook away from it.
We're going to step up and help.
Wow yeah.
Speaker 1 (38:34):
Powerful.
Speaker 2 (38:35):
Thank you Powerful stuff.
Speaker 1 (38:37):
Thank you for your example.
Anything else we should know?
Speaker 2 (38:41):
Um, I don't know.
I do think that, um, in theWestern world, we kind of look
away from things that are hardand things we can't fix and
things we can't find a cure for,and that's kind of why these
families are in the shadows isthere isn't a lot of um light or
um there's't a lot of light orthere's not a lot of exposure
(39:02):
for them.
You're not going to see thesefamilies out that often.
I mean, their kids are complex,so you're not going to see them
out that often.
And so creating these eventsand these supports for them,
it's really life-changing.
It creates a huge impact intheir lives and I would
encourage people to go look atthe videos of what a day in the
life of a family is like.
Speaker 1 (39:26):
Those are on your website lives and I would
encourage people to go look atthe videos of what a day in the
life of a family is like it is.
You know, I'm sitting herelistening to you and thinking,
um, I think we live in anincredible community.
Oh, absolutely, it just is likeit's just never.
I mean, it never ceases toamaze me just how generous and
giving people are and howthere's so many nonprofits that
step in when there's need and godo stuff With that said, with
(39:47):
this population, you're taking avery underserved population and
a population of where peoplemay not know how to interact.
And so I think the other goodyou're doing is probably a lot
of education and teaching people.
Hey, that it's okay when youjust said that your son is not
afraid to go up and talk andpush a wheelchair, or I mean,
there's a little bit of thatright, I think, with just the
(40:08):
general population of just likehey.
Speaker 2 (40:10):
Hesitancy around it yeah.
Speaker 1 (40:11):
What do I, what can I do, or what do I say, or I
don't want to.
Speaker 2 (40:22):
You know what I mean, and so I think, just awareness
of hey, these folks are outthere and they need your love,
and support.
Well, and they're yourneighbors, they're your friends,
your family, I mean, yeah,they're all around us.
Speaker 1 (40:29):
Wow, well, raise for Rare.
What a great name and bigsunshine thing.
And thank you so much for whatyou're doing and for coming on
and letting us know how we canhelp and appreciate what you're
doing.
Speaker 2 (40:44):
Thank you for the opportunity.
I really appreciate it.
Speaker 1 (40:46):
Thanks everybody.
Today on the Ever Onward podcast we have Megan
Shomer.
She is the CEO of Raise forRare.
Following the death of her sonCorwin, she started a nonprofit
that helps families here in theTreasure Valley with children
with severe medical illnesses.
It's an incredible nonprofitand story to tell and looking
forward to share that today.
Megan welcome.
Speaker 2 (00:31):
Thank you.
Speaker 1 (00:31):
This should be fun.
We were just talking about bothat the concert last night.
Speaker 2 (00:36):
Yes.
Speaker 1 (00:37):
Amazing, wasn't it?
It?
Speaker 2 (00:38):
was amazing.
It was a really good show.
Speaker 1 (00:40):
It's funny, I've seen him.
This will be my third time.
Oh wow, I've seen him.
This is my third time.
Speaker 2 (00:47):
Oh, wow.
Speaker 1 (00:47):
Just for different circumstances.
I saw him in Louisiana.
My daughter-in-law was going tolaw school at LSU and he played
at New Orleans and he playedback-to-back with Guns N' Roses.
Speaker 2 (01:01):
Oh wow, I bet that was an epic show.
Speaker 1 (01:05):
In a torrential rainstorm.
Right, remember that, maddie?
Oh, you weren't there.
Was that pre-Maddie?
Oh yeah, so that was a whileago, but this was good.
And then Jelly Roll was great.
That stadium was packed.
It was really awesome.
I know that's part of the planis to do more of those things
and really use the stadium more.
(01:26):
It's such a beautiful setting.
Speaker 2 (01:29):
It's a great space with a beautiful backdrop of the
mountains and the hills.
It was really really cool.
Speaker 1 (01:36):
Well, thank you for coming on today.
We've never met, so this willbe great.
But I've been reading about allthe things you've been doing
and I'm not even sure how we gotconnected to get you on.
Someone called and said youhave got to talk to Megan.
That's a big deal.
And I said I looked it up I'mlike, yeah, we've got to get on
the podcast.
Speaker 2 (01:52):
Well, thank you for having me.
Yeah, I haven't really putmyself out there that much, but
I know that it's to further ourwork, and so that's what I want
to do.
Speaker 1 (02:02):
That's great, yeah, so tell us a little bit about
you.
Speaker 2 (02:07):
Third generation, idahoan, born and raised.
I was born at St Luke'sdowntown, so been here my whole
life and I was in real estatetop producer.
Loved that, and then, in 2012,I had my second son, and from in
utero I knew something wasgoing on with him, and we didn't
(02:27):
know what it was, though, um,so that was a long journey.
Your first child was healthyhealthy, typical um born in 2010
.
So, um, 18 months later, um, Iwas pregnant with his brother.
While they're 18 months apart,um, and in utero, they noticed
when I went in for my genderreveal that something was going
on with his brain.
(02:48):
Ventricles were dilated, justthings weren't right.
But they didn't know what itwas.
So I was highly monitored, wentthrough the pregnancy, highly
monitored and when he was born,we didn't know if he would be
born because they didn't knowwhat we were looking at.
His scans were sent worldwidefrom an MRI in utero and we're
(03:08):
in the NICU, had an immediatereferral to Seattle Children's.
Still weren't sure what wasgoing on, but they knew based on
what was going on with hisbrain, he was going to have
epilepsy, seizures, things likethat.
They just had thought it wouldbe probably closer to nine
months to a year before thatstarted and they started the day
we left the NICU and so sent usinto treatment immediately of
(03:31):
managing symptoms and referralsto neurology and all the
specialists down here.
And while we waited for thatSeattle children's referral
because it was he was born inand that Seattle children's
referral wasn't until June ofthe next year, oh, wow.
Yeah, so we wanted to see—he's aworld-renowned specialist.
He studies rare brainmalformations in children and so
(03:53):
he was the best referral forwhat we were dealing with, and
so we managed symptoms, and theycalled us that November.
Speaker 1 (04:00):
And symptoms were seizures.
Speaker 2 (04:02):
Yeah, severe seizures , infantile spasms he had nearly
every type of seizure, so justmanaging all of that.
Speaker 1 (04:09):
It's terrifying.
Speaker 2 (04:10):
Yeah, and to have a baby doing that is just.
Speaker 1 (04:14):
I think of all the things, all the symptoms that
you know as an ER doc you wouldtake care of and honestly, like
watching your kid seize as aparent, let alone your newborn
infant child whatever go throughwhatever kind of seizure, let
alone multiple kinds.
It's just you feel so helpless.
Speaker 2 (04:36):
Oh, for sure, For sure.
Our first ER visit was to StLuke's Meridian and that was
before we understood thechildren's hospital and how
everything worked.
I mean, he was seizing and itwas uncontrollable.
So took him in there and it washour and 20 minutes and the
yard doc ended up putting hisarm around me and was like
there's nothing more we can do,just wait it out.
So, yeah, terrifying for themtoo.
They were kind of like why areyou so calm?
(04:58):
And I'm just like, well, megetting worked up.
Speaker 1 (05:01):
It's him.
It's actually a pretty goodpoint you bring up, because I
mean, I think there's sometimeswhere the providers are
terrified yeah.
You can tell too, there'snothing worse than like,
especially with like those kindsof seizures where you've kind
of done everything you can doand you've kind of maxed out
your I don't know what else todo.
(05:23):
It's a very difficult place tofind yourself as a provider.
Speaker 2 (05:27):
Well, I'm sure being the one with the answers too,
we're all looking at theprovider.
Speaker 1 (05:32):
Stop this seizure.
Speaker 2 (05:33):
Right, but nobody knows what he has and why it's
happening.
Speaker 1 (05:36):
So they didn't have any idea at that time.
Like the diagnosis, only therewas a severe brain malformation.
Speaker 2 (05:41):
They thought it was a form of lisencephaly, which
ended up not being so.
We went that November.
So he would have been fromApril to November.
They had a cancellation atSeattle Children's so we went up
there.
It was a week of Thanksgiving,snowstorm, all the things that
could go wrong went wrong.
They did an MRI up there.
All the things still couldn'tfigure it out.
(06:02):
So they said keep yourappointment in June.
So continued with symptoms,went back up that June and he
did all the tests.
Dr Dobbins was amazing.
He did all the tests and stillcouldn't figure it out.
And so, right before I left, hejust kind of threw his hands up.
He's genius and so he has tohave a handler.
He's he just kind of was like.
(06:24):
He threw his hands up and he'slike do, and so he has to have a
handler.
He's he just kind of was likehe threw his hands up and he's
like do you notice anythingdifferent from him?
And then his sibling he's likeit could be anything, please.
Just what do you know?
And I was like well, he hasthis little patch of skin that's
a little bit of a differentcolor on his forehead,
something's so minor he didn'teven see it in all these
evaluations.
And he just looked at him andhe looked at me and he goes I
know exactly what this is.
(06:45):
And he ran out of the room andhis handler's like, well, he'll
be right back, he'll be rightback, it's okay.
And he came back with a piece ofpaper.
He's like I've seen this once.
He's like it happened in 95.
She passed in 97.
So don't expect a long lifewith him.
You to live your life to thefullest.
And here's what it is.
And he said there might be morecases.
(07:06):
They're just not diagnosed in away that you can research them.
So he had a combination ofthree rare diseases.
Long story short, they put himin a natural case study and
figured out when it happened,how it happened, and essentially
it was a birthmark on the brain, but he had, instead of those
deep grooves in his brain, hisbrain was cloudy, shaped, he had
(07:26):
a form of hemimegalencephaly,but it affected his whole brain
and so there was no operationsor anything that could be done
and we were kind of just senthome with well, there's nothing
more we can do.
They took all the samples,biopsied it.
They were able to biopsy thosecells that they took from the
skin on his face and tellexactly what happened in the
brain, because those were thesame mutations.
So it was a really fascinatingprocess and terrifying at the
(07:49):
same time, but that's how we gotour answers.
So we just went home and Iwanted to live life to the
fullest.
Speaker 1 (07:55):
We traveled, so, at that point, though, they said,
hey, this is what it is, yeah,and it's so rare, you know,
mm-hmm.
To his point, what was his name?
Dr.
Speaker 2 (08:09):
Dr Dobbins.
Speaker 1 (08:10):
Dr Dobbins like to his point.
Yeah, I know what this is, butwhat was it like as a parent
being told that?
Speaker 2 (08:20):
It's devastating.
I think he told me.
The most impactful thing,though, was he held my hand.
He's like it's devastating, Ithink he told me.
The most impactful thing,though, was he held my hand is
like it's not your fault, youknow, because, as a parent,
that's what you're thinking isyou're thinking did I do
something?
Am I a factor in this?
And it wasn't anything that Idid or anything, and so, um, but
it's, it's a devastating thing.
Speaker 1 (08:39):
Isn't it powerful being told that yes?
Speaker 2 (08:42):
it is.
That's what.
That's what I mean, and I wouldencourage any provider that can
say that to say that, becausethat really does make a
difference in the parent's lifeand just understanding how these
things happen.
Speaker 1 (08:53):
So, yeah, but it's often overlooked.
Right, right, and it's a smallthing to say really Well, and
I'm glad you brought it upbecause I think I don't think
it's unintended I mean?
Speaker 2 (09:09):
I mean, I don't think you're trying to not say it,
it's just like you think.
Speaker 1 (09:10):
Well, that's of course.
The mom knows that these kindof genetic things happen as
cells divide and kids are born,and she's not going to blame
herself, right?
Why would she blame herself?
But we do you do right, and Iguess that's the other message
for people listening out thereif there's any providers is that
(09:31):
it's powerful to hear that fromsomebody.
Speaker 2 (09:34):
Yeah, just that reassurance that you didn't mess
up.
This isn't anything youintentionally did, and I think
it's just parent guilt, right.
Even if your kid is sick, youwant to do everything possible
or you think, well, maybe Ishouldn't have taken them to
that thing and they wouldn'thave gotten sick.
You just kind of run throughall the scenarios, right.
So this just takes that to awhole other level.
Speaker 1 (09:55):
Well, and you just like until you're a mom right.
Speaker 2 (09:57):
Until you're a mom.
Speaker 1 (10:07):
And you love this child more than you've loved
anything and you would doanything for it.
It's, it's a it and I like, Ithink, like.
I think dads are great too,yeah, but they're not moms right
right well, especially in thoseinfant years yes when they're
so reliant on the mother yeah,yeah
yeah, so I I've said this beforeon this podcast, but but my
daughter, when she held herfirst baby, I just whispered in
(10:27):
her ear and now you know howmuch I love you.
Right, Kind of thing.
It's not a this world, thislove that happens.
So you get the news.
Speaker 2 (10:37):
Talk through that.
Speaker 1 (10:39):
Because that's a devastating thing to hear, and
you're clearly a very strongperson, because we're going to
talk about what you're doingwith all this, but what did you
do with it?
Speaker 2 (10:50):
I looked at it as I don't know how long I have him,
so I'm going to do everything tomake his life the best it can
be.
I wanted quality over quantity,in the sense of I was willing
to take certain risks to makesure he lived a life.
I didn't want to go home andjust stay there and shut in and
not live.
And his neurologist said that'swhat most people with a
(11:11):
diagnosis like this do they justshut down.
Because I had asked him, I saidcan I take him to New York City
?
And he kind of paused and helooked up and he's like yeah,
you should go and here's a listof things you should do while
you're there.
He's like most people don't askthese questions, they want to
just shut in and kind of live ina bubble.
And I was like that is not whatI want.
I don't know how long ithappens, so I want us to have
all the memories as a familythat we can.
Speaker 1 (11:33):
That's great.
Speaker 2 (11:34):
Yeah, so that was my mission.
So we went to New York City,went to Seattle, went to
Disneyland multiple times, allwhile managing symptoms.
We had lots of visits when wewould end up at the hospital, we
were always in the PICU becausehe was such high-level care, he
was on a myriad of medicationsand there was no support groups,
there was nobody with what hehad, so it was very isolating.
(11:58):
And I tried to join some othersupport groups of one of the
rare diseases and there's somebullying in that.
They said, well, he doesn'thave exactly what we have, so no
, you can't join this group.
And I was just like, but thisjourney is similar, right?
And so all of this wasembedding in me throughout this
journey and ultimately he endedup passing away when he was four
(12:21):
and a half.
He had several bouts ofpneumonia that year and that was
finally what took him.
But he did.
We lived every day to thefullest and did everything
together, and I mean taking careof him.
I didn't have REM sleep forfive years because there aren't
good seizure monitors for whathe had, and so I basically slept
(12:43):
with my arm across him andmonitored him myself.
I could hear breathing, I couldhear movement, you know, just
feeling that as the mother,you're just like right there.
So it was like having a newbornbaby for four and a half years.
Speaker 1 (12:59):
And I know, I know I read this, but what was his name
?
Corwin Corwin.
Speaker 2 (13:02):
Yes, and I picked that because in utero, corwin
means companion of the heart,and I didn't know how long I'd
have him, but I knew he'd alwaysbe in my heart, so that's where
that came from.
Wow, yeah.
Speaker 1 (13:16):
That's awesome.
And so what about your olderson?
Speaker 2 (13:21):
Yes, his name is Maxim.
Speaker 1 (13:23):
Maxim Mm-hmm and talk about how Maxim handled this
and what was it like for Maxim.
Speaker 2 (13:30):
Well, he was 18 months older.
So for him that's all he knew.
I mean, when his brother wasborn we were just thrust into
this medical journey immediatelyand so that's all he knew.
That's his brother and that'sfine.
And so that's all I knew.
That's his brother and that'sfine.
And it did make it difficultwith other sibling friends like
friends that had siblingsbecause they would bicker and
banter and he's just like whyare you doing this?
(13:52):
Like I would never fight withmy brother, kind of a thing,
because he couldn't talk.
So I mean, corwin neverdeveloped past like that of a
three-month-old so he could cooand smile and laugh and all
those things, but he nevertalked.
He wasn't going to fight hisbrother, he wasn't going to
steal his toys or anything.
So Max just found ways toconnect to him.
They'd read books together, hewould drive his toys on him when
(14:13):
he was really little and justyou know he liked to just be in
the same room and hang out withhim and, like I said, go on all
these adventures we did.
But for him it's difficulthaving a sibling like that
because and this is somethingwe're kind of featuring for this
year I like to always find anew feature of the year, of a
(14:34):
perspective of this journey.
So this year is siblingsexperience, and siblings of
medically fragile or medicallycomplex children are called
glass children because they'reoften invisible in the family
dynamic.
They are neglected, notintentionally, but when the
sibling has such high care andsuch high needs.
Their needs are oftenoverlooked, because it's
(14:58):
literally life or death with onechild, and so the other child
sometimes just feels left out orthey don't understand that
therapies and appointmentsaren't just attention or
something fun.
They just see it, as you know,that my sibling gets to go do
all these things and I don'thave them.
So we'll get into more aboutthat, how we're helping those
(15:18):
siblings.
Speaker 1 (15:21):
And so when he passed , Maxim was.
Speaker 2 (15:25):
He was six Six.
Speaker 1 (15:27):
Mm-hmm, how did he handle that?
Speaker 2 (15:29):
He handled that.
Kids grieve differently and Ireally put a lot of thought into
how we brought him into that.
And so when his brother I meananytime he asked a question, I
felt if he could ask thequestion he deserved the answer,
the honest answer.
I mean as delicate as it couldbe, but if he can ask the
question he deserves the answer.
(15:51):
I don't want to hush him or putit away.
So we, um, from the day hisbrother passed, we actually had
him on hospice, he was at home.
It was the best, worstexperience you could have.
Um, it was a really beautifulmoment and I wouldn't trade it
for anything.
I mean to have that it's.
It's so powerful to have it onour terms, that that moment of
(16:13):
passing.
But, um, we were at home and hehad come home from school and
we knew it was eminent, and so Ihad told him.
I said I'd taken him in theother room and just said your
brother is going to be passingaway, he's not going to be here
with us, so you need to go saygoodbye.
So we went in and, yeah, I wasgoing to say I don't want to cry
, but we went in and he said hisgoodbyes and then he went with
(16:35):
my aunt when he felt he wasready and I said he won't be
here when you get back.
And so, sure enough, later thatevening he came back and he
walked right in there and helooked around and Max is very
matter of fact.
So he's just like, well, yep,you're right, he's not here.
So, okay, this is what it is.
And from there he had questionsand everything.
And then when we had the viewingthere was a whole discussion
(16:55):
about that and he became heneeded a job.
I've I saw very quickly heneeded a job.
So I was like, why don't yougive people tissues?
So he became we called himtissue enforcement, because if
he saw a tear you were getting atissue.
But it let him be involved inhis own way, right.
And so then at the service evenI had, at the casket we had,
(17:17):
were his cousins and anyone whowanted to could go write and
draw on it, and it really justallowed people to connect
through art and their messages.
But it allowed children to beinvolved in that grief process.
I feel like they often get lostin that grief process.
So giving them space to be apart of that in whatever way
that looks for them.
(17:37):
So letting them color on thecasket is letting them, you know
, grieve in their own way.
And then, at the Celebration ofLife, max had a little station
set up where everyone wrotenotes to his brother and he ran
that.
He was six but he ran thatstation and here's what you're
going to do, and it just gavehim purpose in that whole
experience and allowed him togrieve in his own way.
Speaker 1 (17:57):
So, yeah, him to grieve in his own way.
So, yeah, death, you had timebecause you kind of knew right,
right, some people don't, butit's so final and that's the
(18:18):
only way I can describe it,whether it's sudden or expected,
or a child or a teenager oryour mother or um it, you, you.
You don't have to wonder toomuch why there's so much poetry
written about it.
I mean, I like emily dickinson,like has so many different, but
it's just so indescribable thefeelings and the the kind of
loneliness and finality of it Iguess.
(18:38):
Yeah, I had a nephew that livedwith us, that you know.
It's been over 10 years now,but I still think about him.
Speaker 2 (18:47):
Yeah.
Speaker 1 (18:47):
All the time Like it's.
All the time it's with youforever.
Like he never left, but in alot of ways.
But it's just and kind of somethat gnawing pain, or loneliness
, or emptiness.
Speaker 2 (19:04):
It's an emptiness.
Speaker 1 (19:05):
Emptiness.
Speaker 2 (19:06):
Yeah.
Speaker 1 (19:06):
It just doesn't go away.
Speaker 2 (19:08):
Right, right.
Speaker 1 (19:09):
And it's probably a good thing it doesn't, because
it keeps their memory it keepstheir memory, but you just miss
them.
Right, it's that thing, youjust miss them.
Speaker 2 (19:16):
Yeah, yeah.
Speaker 1 (19:18):
You can only imagine when it's your child.
Speaker 2 (19:19):
I can't.
Speaker 1 (19:19):
I can't imagine there's some sometimes when
empathy kind of doesn't workright.
Speaker 2 (19:23):
In certain situations .
Speaker 1 (19:24):
Right yeah, Well, thanks for telling your story,
so this sparks you.
Speaker 2 (19:29):
Yes.
Speaker 1 (19:29):
Like, uh, like this was it like.
I'm going to do something aboutthis.
Speaker 2 (19:35):
So I was um at the time.
I mean the year he passed, Iwas a top producer in real
estate and so my son passed inNovember.
December, I was at my companyChristmas party and they were
kind of like, so you're going todo your own brokerage.
Now they really wanted me totake the brokerage to the next
level.
And I just I looked at him andI said, no, I, my heart is, I've
seen too many things, I've seentoo many gaps, I've seen too
(19:57):
much neglect in the community,just that this population is
really overlooked.
And I wanted to shine a lighton them and I wanted to be
practical about it.
And so I told them my idea andthey were all you know.
Several of them were just likewe're in, we want to be a board
members, let's go.
And so I mean these were people,some of them I'd worked with
(20:19):
for 15 years.
I mean I stayed at my at thatbrokerage, I'd been there over
10 years and so we were close,we had worked together for a
long time.
But they were, they were in it.
And so I was like, well, I need, I need a little time.
I mean this was one month laterand so, january, they were like
, okay, let's do it.
So they kind of nodded, youknow, pushed me along and nudged
(20:41):
me along and I had a clientthat was a nonprofit attorney
and so I reached out to her andshe's amazing, she's the
director of Idaho Legal Aid now.
Sunrise, which her name isperfect because the sun I wanted
to be light and warm to ourfamilies.
She helped us get everythingtogether and we were from his
his passing.
(21:02):
Within three months we were 501.
Speaker 1 (21:03):
Wow.
Speaker 2 (21:03):
So yeah.
Speaker 1 (21:04):
What a tremendous way to take energy and emotion and
pour it into a new passion thathelps people.
Speaker 2 (21:12):
Yeah, I don't remember who says this, but they
say when you go throughsomething like that, lose
yourself in the service ofothers, and I cannot express how
much healing comes with that.
It really does it really helps.
Speaker 1 (21:25):
It's a hard thing to and you have to be careful when
you tell people this butwhatever you're going through in
your life, whether it issomething as horrific and as
tragic as the loss of a child,versus a hard thing with a I
don't know relationship or workor whatever that it is like
(21:46):
living life arrows out and likego serve someone, go do
something, it doesn't it givesyou that purpose.
It doesn't come across well whenthey're like coming to you and
saying, hey, what should I do?
I feel horrible, it's like it'sme, me, me, and you say, go
find a way to put that energysomewhere and watch what it does
, because it'll bless you itreally does.
Speaker 2 (22:03):
You're a great example.
Speaker 1 (22:04):
This is a great story .
Thank you, so you started yournonprofit.
Speaker 2 (22:08):
Yes.
Speaker 1 (22:08):
Did it start as Raise for Rare?
Speaker 2 (22:11):
Well, I did not want this name, but this was the
first name.
The first name was Corwin'sCause.
It was named after Corwin, butI never wanted it to be about
him.
It was about these familiesgoing through this journey now,
and so we took that nameinitially, just because it made
sense.
We really had so much momentumthat we didn't want to hold back
(22:32):
on a name.
So we were like we'll figurethe name out later, let's go,
and doors just kept opening.
So we were 501.
We approached Tricidio Homesvery early on about the idea and
they were just like we're in.
They hosted our firstfundraiser.
They've been our biggestsupporter from day one to now
and so that's been an amazingrelationship to have John now
(22:53):
sits on our board and it's beenincredible the support they've
offered.
But just having all these doorsopen and I actually had went to
the local children's hospitaland I was kind of like I wanted
to meet with leadership ofhere's where things went great
with my son, but here's somethings that are lacking in the
system, so advocacy was a bigpart of this.
Speaker 1 (23:14):
How did that go?
Speaker 2 (23:15):
They actually looked at me and said nobody's ever
come to us and talked to us likethis.
Come help us do better.
And so I'm on, I think, five orsix different advisory
committees.
At that time, pediatricpalliative care did not exist in
our community, and that wassomething I was very passionate
about, because when you'redealing with all these different
specialists, pediatricpalliative care is a little
(23:36):
different than adult, and thereason it's important is because
when you're dealing with allthese different specialists, I
was put in a positionspecifically where one
specialist said he needs thisintervention or he's going to
die.
Speaker 1 (23:48):
I didn't think about that.
Speaker 2 (23:49):
And another specialist goes if you do this
intervention he's going to die.
And they put the parents in themiddle of well, what do you
want to do?
Do you want to risk his life,do you not?
Either way, it doesn't lookgood, and so palliative care
comes in and does goal settingand helps families decide what
interventions are right, with aprovider on their side, not kind
of putting them in the middleof these situations.
It helps them navigate thesystem and then, at appropriate
(24:13):
time, move them to hospice ifnecessary.
So that just didn't exist and Ijust thought as a children's
hospital.
Speaker 1 (24:19):
It's just I'm like, of course it didn't.
I mean, it just is a.
It's a unique intersection of alot of subspecialists that are,
you know, and then you are theparent, you're the advocate for
the child, so you would getstuck right in the middle of
that.
Speaker 2 (24:32):
Yes, well, and they had had kind of all these
different diagnoses.
They were kind of in their ownsilos oh yeah.
So I said, but they all wouldbenefit from this program.
And that was the aha moment oflike, oh yeah, okay, let's build
this program.
So I feel so fortunate they letme be part of the needs
assessment to interviewing thedoctors and the social workers
(24:52):
and the whole team, and we'restill heavily involved with them
and in fact the, the doctor,sits on our board and so does a
social worker.
I mean it's been an amazingfull circle relationship.
But just advocacy was a hugepart of our work.
And then I really wanted to bepractical.
So we go in and what I found wasthere's a lot of charities when
(25:14):
you have a sick child that goto the hospital and they bring
gifts and toys, and that's allgreat, but a medically complex
child is not at the hospital.
That often gifts and toys andthat's all great, but a
medically complex child is notat the hospital that often.
They're usually at home.
I mean, I had an ICU set up inmy house and rarely did we go to
the hospital, because when yougo in with one thing, you come
out with another.
So you really try to avoid itbecause you have a good place to
get sick.
(25:34):
Right, right.
So we had an ICU in our houseand I was just like everyone
takes that support to thehospital.
What about the families at home?
So I was just like, why don'twe do practical things?
So we do things like house care, lawn or house cleaning, lawn
care, snow removal reallypractical things that just take
something off their plate, andthe response has been
(25:57):
overwhelming of just how helpfulthat's been for the families.
We also have added supportgroups.
Again that community.
I looked at it as there's over8,000 rare diseases and you
could have one of them, amixture of them, it doesn't
really matter All forms ofpediatric cancer, so stuff you
learned as you went through thething, which is hey, what do you
?
Speaker 1 (26:16):
So let's talk about the term Sure, medically fragile
is a term and give us a littlemore information on that.
Speaker 2 (26:22):
So that's a child that's high acuity.
They have multiple specialists,they require therapies or
machine interventions to live.
For the most part they're totalcare kids, and so there's more
than 7,400 in our community.
Wow yeah, the need is muchlarger.
Speaker 1 (26:41):
There's 7,400 in our community.
Speaker 2 (26:43):
Wow yeah, the need is much larger.
There's 7,400?
.
Speaker 1 (26:44):
Mm-hmm.
Yeah, and what's your reach?
Speaker 2 (26:46):
We are within 30 miles of the Children's Hospital
as our main service area, andthen we do serve some rural
families.
We can't do the in-homeservices in the rural
communities, but we do send thema gas card because we know
they're coming in for all theseappointments.
Speaker 1 (27:00):
So there's 7,400 kids in the healthcare in our local
pediatric healthcare system.
Yes, Wow, there's more thanthat.
Speaker 2 (27:08):
That was last year's number.
I don't have this year's number.
What a like it's a huge need.
Um, so when we started in 17,it was, I think it was 1,850
families.
So from 2017 to 24, that's howmuch the Valley has grown with
these kids, wow, yeah.
Speaker 1 (27:30):
What do you see in common?
Like you, because you wentthrough it and now you've been.
So you've been the directorboard and it's your, your 17.
So you're eight years in.
Speaker 2 (27:40):
Yes.
Speaker 1 (27:41):
Probably seeing a lot of ways that these families
have in common, kind of, andthey're probably looking at you
going, oh, thank heavens, Likeyou, you get us.
You know what.
You know what we need.
Speaker 2 (27:51):
Yeah, in fact, a lot of the families say you know
what we need before we do.
That's been a very common thing.
That's been said to us and I'mlike, because I loved it, you
know.
So I gave up my real estatecareer in 19 to run this
completely.
Our board that was in like thefive-year plan, but the board
was like somebody needs to runthis now and you're the one we
want to do it.
Speaker 1 (28:11):
So you do it full time and talk about?
Can we go to your website?
Speaker 2 (28:15):
Yeah.
Speaker 1 (28:16):
So the URL raiseforrareorg and let's go
through some of the services youprovide and sure, and some of
those those details to get thisinformation out yeah, so the
applications on the website, um,people can just go fill it out
and it's reviewed by a medicalteam.
Speaker 2 (28:36):
But, um, if you scroll down a little bit, you
can see our.
So we do those in-home servicesthat are really practical.
Like I said that, lawn care,housekeeping we do snow removal.
Support groups have becomereally big.
We do four of those a month.
That's where the caregivers canget together and share the
highs and lows of this journey.
We used to do those virtuallybut we found in-person connects
(29:00):
a lot more Connects peoplebetter.
Yeah.
Yeah, there's something aboutduring COVID and everything.
We did those virtually, but assoon as we could have them in
person.
These families are reallyisolated, and so I think anytime
they can get out, they reallydo appreciate that opportunity.
Speaker 1 (29:14):
And you said it early on when you tried to join some
groups that were maybe notinclusive.
Right, did that help you andteach you what you would do when
you tried to join some groupsthat were maybe not inclusive?
Speaker 2 (29:20):
Right.
Speaker 1 (29:21):
Did that help you and teach you what you would do
when you're out recruiting andhow you make these feel
inclusive for folks?
Speaker 2 (29:27):
Absolutely.
Yeah, I look at it as thejourneys are different but the
feelings are similar, and so itdoesn't matter what that label
is.
You're all on a complex medicaljourney, going to the same
children's hospital, seeing thesame specialists dealing with a
lot of the same interventions,or G-tubes or CPAPs or all these
different types of cares, sothat label doesn't really matter
(29:50):
.
Speaker 1 (29:51):
Let's pause for a little bit.
So I think, for peoplelistening, I don't think.
Well, maybe, unless you've beenaround it some way which I had
the opportunity to be around ita lot, because that's where
people ended up is in the ER.
Speaker 2 (30:05):
Right.
Speaker 1 (30:06):
But you talk about this total care, right?
So a G-tube is a gastric tube,which is a permanent tube that
is placed directly into thestomach and that's where the
feedings are given on a routineschedule.
And there's a whole bunch ofscience and there's a whole
bunch surrounding feeding tubes,of how you use them, and then
(30:27):
there's the care of a feedingtube, because the feeding tube
goes straight from the stomachto the exterior.
There's a lot of problems andcomplications that come with
feeding tube.
That's the feeding tube side.
So then there's respiratorystuff and that's got its whole
thing.
And, depending on the kid andwhether their diaphragm works
and what kind of breathingsupport they need, is it at
(30:49):
night alone or is it during theday?
Do they have a tracheostomytube or not?
Are they on a ventilator or not?
I mean, there's just so muchand it's an entire thing.
Speaker 2 (30:59):
And the parents have to learn all of these things.
They can't.
There isn't a specialist foreverything I mean, as in they
have to do these cares at home.
Speaker 1 (31:08):
Yeah, so I mean it's a lot.
Speaker 2 (31:11):
It's a lot.
It's overwhelming.
Speaker 1 (31:12):
So you take each organ system right.
So you look at like GI stuffgoing in, stuff coming out.
How are you dealing with all ofthat?
You take respiratory everythingfrom.
How are they oxygenating, howare they breathing, are they
getting infections?
How to maintain all this?
And that's just the start.
Then take meds.
Speaker 2 (31:33):
Oh yeah, then the meds.
Can I mean the routine of them?
How?
Speaker 1 (31:36):
they're delivered.
When they're delivered, what doyou do as needed meds?
Speaker 2 (31:40):
Right, Rescue medications.
Rescue medications, I mean youstart going down the list and
(32:05):
oftentimes these folks havedifferent backgrounds and
capabilities that they come intothese kids with and then You're
just presented with okay,you've had a new admission in
the hospital.
Now we're adding a new, a newthing to maintain this new
symptom and a new thing and itsome families experience it all
at once.
I mean we have some kids onservices that are like non-fatal
drownings, so they go from atypical kid to total care.
So those families are learningit all at once.
Where mine was incrementally, Ilearned one thing at a time,
kind of, but some families arethrust into it all at once.
(32:26):
So it's very overwhelmingeither way, but it's a lot to
take on.
Speaker 1 (32:32):
Health care has changed.
It just has.
I mean, it's just differentthan it used to be.
I think it's a lot of pressureson healthcare.
Speaker 2 (32:43):
Yeah.
Speaker 1 (32:43):
A lot of pressure from a lot of different
directions, and so even withprimary care it's hard.
But I think one of the thingsyou've mentioned a couple times,
the so there's the nuts andbolts of taking care of a kid,
which we've talked about, butthen there is the.
It's almost the emotional andmental drain of being the one in
(33:06):
the middle.
You've brought it up a coupleof times, but you become de
facto the care provider that'scoordinating all these
specialists.
Speaker 2 (33:13):
Well, the specialists , the insurance like the DME.
So the equipment I mean you'renavigating all of that, it's
just you're navigating all of it.
Speaker 1 (33:22):
So DME is durable medical equipment.
It's a whole other thing.
So if you think abouteverything related to each organ
system has its DME required andhow all of that gets maintained
and delivered and paid for andused, and then when it goes,
when it has a problem that youhave to troubleshoot, I mean
talk about overwhelming- it is.
Speaker 2 (33:41):
It really is overwhelming, and unrelenting
right.
It never ends, 24-7, 365.
Yeah, yeah.
Speaker 1 (33:50):
Didn't sign up for it .
Speaker 2 (33:51):
No right.
Speaker 1 (33:54):
What are some of the common things you see out of the
parents in these sessions?
That one it's probably greatjust to talk about this with
others.
Your cohort.
Your cohort is a very uniquegroup of people dealing with the
same thing, but what are somethings you hear from them?
Speaker 2 (34:09):
Well, they go from everything.
It's highs and lows.
So laughing about things thatprobably the general public
would be mortified that we werelaughing about, right, just some
things that happen in thatjourney.
But then there's also ways tonavigate cares.
So just helping each other.
Oh, I found this life hack,essentially of we had one kid
(34:30):
that was vomiting, likeexcessively, I mean we're
talking the mom she said she waschanging the bed every couple
hours all night long.
And so another mom said, well,just layer blankets.
So then when this happens, pickthem up, pull it out, put them
down, you don't need to bechanging the bed.
And so it was just kind of thataha moment of I mean that just
helped her tremendously.
(34:51):
I mean just kind of thosemoments of I've lived this,
here's what worked for me, andjust imparting that wisdom onto
other families.
So that's been really helpfulto see navigating which
specialist for which treatmentand intervention did you use and
what did you like about them,what were your concerns, what
would you do differently.
So just all of thoseconversations that would go into
(35:12):
big decision-making, I mean doyou find some people are
hesitant to come to grouptherapy and engage?
Yeah, we see that for sure.
I mean we serve over 200families.
I think we have, as ofyesterday, 212 families on our
services and there's probablyonly about 20 that attend group
(35:33):
regularly.
So I mean there's a lot of roomfor more to join.
But I think time too too isanother factor the ability to
get mental health support.
We do have a licensed clinicalsocial worker that runs the
groups and has now moved intoour office and offers individual
sessions, so that's alsoallowed families to come in on
their own time.
That's great.
Speaker 1 (35:52):
Yeah, that's great.
This is going by fast.
I want to make sure we getthrough.
So you have your organization.
What are some awareness things,ways people can get involved if
they know someone that may notknow about you and what you do,
and then how can people help?
Speaker 2 (36:08):
Yeah, I would send everyone to the website.
So that has everything from ourvideo explaining our work.
You can fill out an application, you can donate directly on the
website.
You can sign up to volunteer.
We need a lot of volunteers.
We do events for the familiesas well, so we do six events for
the families as a whole andthen we do four sibling events.
We do a sibling event everyquarter just for them to have a
(36:29):
special time.
So we need volunteers for allthese events.
Between support groups, familyevents and fundraising events,
we run 60 events a year, so weneed a lot of help with the
event support.
Speaker 1 (36:43):
So anyone out there that has some extra time where
they want to volunteer for anorganization that.
I mean this is a great place togo put some time and you're
supporting the families throughdifferent events you put on, so
you probably have people alsolike to be led.
So you have pretty clear hey,volunteer, we need these things.
You put them to work right awayclear direction on what they'll
(37:05):
be doing.
That's awesome.
So there's the volunteer page,and then are there any other?
Do you have fundraisersthroughout the year or other
ways people can participate?
Speaker 2 (37:15):
Yeah, we just finished our golf scramble,
which was amazing.
Sold out record numbers thisyear, so that was awesome.
And we have cookies for a causecoming up.
That's where the local cookiecoalition gets together.
They make those beautiful,highly decorated cookies, donate
them all to us, so then all theproceeds go back to the
organization I mean there's.
Last year there was about athousand cookies, so there's a
(37:37):
lot of cookies to sell.
That's coming up on August 9thand it's at the old Intuit
buildings I don't know whattheir new name is going to be
called.
But right there in Eagle at thebottom of the hill below Chinden
.
So that's where that is.
And then we also do a SunshineGala in September, and that's at
the Chateau in Eagle as well.
Speaker 1 (37:57):
That's great, and that's at the Chateau in Eagle
as well.
That's great, that's fantastic.
Speaker 2 (38:03):
Well, this is awesome , thank you.
Speaker 1 (38:06):
Appreciate it.
And so how old's Max now?
Speaker 2 (38:09):
He is 14.
Speaker 1 (38:10):
14.
So he's grown up with theorganization.
Speaker 2 (38:13):
Oh yeah, I mean it's part of his heart.
I mean he gets in at thoseevents and he's not afraid to
touch kids in wheelchairs orhe's very comfortable with this
whole thing.
And I feel like it's continued.
That memory of his brother forhim, of this is a reality in our
world and we're not going tolook away from it.
We're going to step up and help.
Wow yeah.
Speaker 1 (38:34):
Powerful.
Speaker 2 (38:35):
Thank you Powerful stuff.
Speaker 1 (38:37):
Thank you for your example.
Anything else we should know?
Speaker 2 (38:41):
Um, I don't know.
I do think that, um, in theWestern world, we kind of look
away from things that are hardand things we can't fix and
things we can't find a cure for,and that's kind of why these
families are in the shadows isthere isn't a lot of um light or
um there's't a lot of light orthere's not a lot of exposure
(39:02):
for them.
You're not going to see thesefamilies out that often.
I mean, their kids are complex,so you're not going to see them
out that often.
And so creating these eventsand these supports for them,
it's really life-changing.
It creates a huge impact intheir lives and I would
encourage people to go look atthe videos of what a day in the
life of a family is like.
Speaker 1 (39:26):
Those are on your website lives and I would
encourage people to go look atthe videos of what a day in the
life of a family is like it is.
You know, I'm sitting herelistening to you and thinking,
um, I think we live in anincredible community.
Oh, absolutely, it just is likeit's just never.
I mean, it never ceases toamaze me just how generous and
giving people are and howthere's so many nonprofits that
step in when there's need and godo stuff With that said, with
(39:47):
this population, you're taking avery underserved population and
a population of where peoplemay not know how to interact.
And so I think the other goodyou're doing is probably a lot
of education and teaching people.
Hey, that it's okay when youjust said that your son is not
afraid to go up and talk andpush a wheelchair, or I mean,
there's a little bit of thatright, I think, with just the
(40:08):
general population of just likehey.
Speaker 2 (40:10):
Hesitancy around it yeah.
Speaker 1 (40:11):
What do I, what can I do, or what do I say, or I
don't want to.
Speaker 2 (40:22):
You know what I mean, and so I think, just awareness
of hey, these folks are outthere and they need your love,
and support.
Well, and they're yourneighbors, they're your friends,
your family, I mean, yeah,they're all around us.
Speaker 1 (40:29):
Wow, well, raise for Rare.
What a great name and bigsunshine thing.
And thank you so much for whatyou're doing and for coming on
and letting us know how we canhelp and appreciate what you're
doing.
Speaker 2 (40:44):
Thank you for the opportunity.
I really appreciate it.
Speaker 1 (40:46):
Thanks everybody.
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