Staying Is the Bravest Thing: A Love Story Through ALS | Lori Oberholtzer

"It is so natural to work to avoid pain, hardship, and suffering. People will travel thousands of miles, leave, or get very good at pretending in order to escape pain. But, what does it look like to stay, especially knowing it will be impossibly hard, heart-wrenching, and will push you beyond your human limits and desires?" -written by Lori & Justin Oberholzer  "Teach me to stay" blog on walkuphill.com

Lori Oberholzer shares her raw, powerful story of walking through her husband Justin's seven-year journey with ALS while continuing to hold space for her family with remarkable faith and resilience.

There are famous people and then there are silent superheros who create the greatest impact to those around them by loving faithfully. Lori is one of those people. Get your tissues out and get ready to be encouraged by this sacred conversation with a remarkable woman.

Visit Lori's and Justin's blog at walkuphill.com to follow their journey.

or purchase a quit from Etsy to support them.

https://www.etsy.com/shop/walkuphillquilts

Send us a text

Support the show

-Links-

https://www.svetkapopov.com/

https://www.instagram.com/svetka_popov/

Episode Transcript

Speaker 1 (00:00):
This episode is truly special and I would have to
warn you that if you're going tolisten to it, get some tissues
out, because we have basicallycried our makeup off our eyes
during the interview.
Lori Oberholzer has a reallybeautiful story of continuing to

(00:22):
walk through some really reallyhard things.
She's on her seventh year ofher husband being diagnosed with
ALS and she shares the raw, thereal, and she's continued to
faithfully walk with him in thatseason and hold space for her

(00:43):
family.
And I know that you'll beencouraged by this episode.
Even if your situation lookscompletely different and perhaps
you're walking in the middle ofyour heart, this one is a
really special one and I knowthat you'll be encouraged by it,
so tune in and be encouraged.
Hey friends, welcome to theOnes who Dared podcast, where

(01:05):
stories of courage are elevated.
I'm your host, becca, and everyother week you'll hear
interviews from inspiring people.
My hope is that you will leaveencouraged.
I'm so glad you're here, loriOberholzer.

(01:28):
Welcome to the Once a Yearpodcast.
I am so honored to be sittingacross from you.
Thanks, happy to be here.
So there has been multiplepeople that were like, oh my
gosh, do you know Lori?
You need to have her on thepodcast and I'm like, no, I
don't know Lori.
And then, after hearing thatmultiple times, it was like
maybe I should look this Lori upand you know who are they

(01:50):
talking about.
And then I met you and then Iwas like, oh, I need to have
Lori on the podcast.
Oh my gosh.
So here we are.
This is like a month later,right or so, with your busy
schedule and all of that.
You made it.
So congratulations, made it.
I'm here.
Yes, you're here, Yep, yeah, soyou have quite an incredible

(02:13):
story and a hard story, and alot of us also have hard stories
, and so for me, I know thatyou're in the middle of still
walking all the things out, youknow, and that can be a really
hard place to be because youdon't know the future and you're
in the middle of it, and butwhat I personally admire about

(02:35):
you is the way that you'rewalking it out.
Thanks, and that's why I reallywanted to have you here.
Yeah, thank you, and that's whyI really wanted to have you
here.
Yeah, thank you.
Okay, so can you share a littleabout your life?
Before you found out yourhusband's ALS diagnosis?
What was your life like?

(02:55):
What were you up to?
Your family, all of that?
I know you guys were building abusiness.

Speaker 2 (03:01):
Yeah, yeah.

(03:26):
So Justin and I I guess we'recoming up on 12 years now but I
was working at a nonprofitcalled Hope International and
they do under microfinance.
So we had one daughter namedTalia and I would say I was a
pretty creative person.
So we were pretty goal-orientedand a really good team in all
things and we started flippinghouses together because we had
kind of a dynamic duo going on,with Justin being a realtor and
he was on the buy-sell side andthen I did all the design stuff

(03:47):
in the middle and we lovedtraveling, we had a great
community and we're reallyinvolved and both very
extroverted and very social andso, yeah, just people traveling,
both doing what we werepassionate about, and then just
on the cusp of building abusiness together.

(04:11):
So we kind of had always said,hey, maybe when we get pregnant
with a second kid we will, likeLori will stop doing Hope
International and I will build abusiness.
And we ended up doing that andI will build a business.
And we ended up doing that.
I got pregnant with Benny and Itransitioned to starting Plum

(04:32):
and Fig, our interior designflipping business, which I love
the name.

Speaker 1 (04:36):
Can you give us a backstory on the name and what
it means?

Speaker 2 (04:38):
Oh, yeah, yeah that.
So Jess and I, we're bothextroverted on social and are a
great dynamic team, but we alsohave some pretty different skill
sets.
So plum came from it kind ofrepresents like Justin was the
more like measured, calculated,analytical one.
So that came from a plum lineand then we just kind of put a

(05:01):
fun spin on it.
And then fig is just Italianfruit and it's beautiful and has
a beautiful color and a niceaesthetic to it.
So we called it Plum and Figand it kind of represents the
two parts of our businessbecause we both had different
priorities.
Like he was on the buy-sellside, I did all the design, so

(05:22):
we were flipping houses togetherand I had—Justin was really—is
still really good at supportingall my creative endeavors.
I kind of—very creative, loveto start things and he is always
supportive.
So I did a house flip and hewas supportive.
And then, yeah, right, when Igot pregnant again, I was like I
want to keep doing this.

(05:42):
So we started that businessAmazing.
So that kind of led up to hissymptoms.
That was right before.

Speaker 1 (05:47):
Yeah, and on your website I've seen like the house
that you guys redid together.
It's beautiful, beautiful work.
So, yeah, you have the interiordesign background, which is
amazing, and business managementcorrect.

Speaker 2 (06:00):
Yes, like what I went to school for.
Yeah, I like most things, I dothings a little bit different.
But I went to a Christianprivate school but also went for
art.
So they didn't have an artprogram.
So I went to another school.
I made up my own major and Icombined business and art and
made up my own interior designmajor.
Essentially Wouldn't recommendthat, but that is what I did and

(06:21):
I'm using it.

Speaker 1 (06:23):
But I would say and Justin's really outdoorsy, loves
backpacking all the mountainstuff.

Speaker 2 (06:29):
Yep, he was a yeah, totally athletic.

Speaker 1 (06:39):
He loved backpacking and went on an annual trip with
his buddies every year and wetraveled a lot, a lot in Europe
and, yeah, africa and all over.
Yeah, we loved travelingtogether.
Amazing.
So you're pregnant with yoursecond child, yep, and then, at
that point, your husband, justin, has some what's going on with
his hand.

Speaker 2 (06:55):
that there were some symptoms, yeah, where that
caused you guys to go to thedoctor so we found out we were
pregnant and then that kind oflike cued our transition from my
work to starting our ownbusiness, which was kind of
crazy timing.
It also meant we like lost ourhealth care and we were just
going to carry that on our own.
But right around that timeJustin was starting to

(07:18):
experience weakness in his hand,which was really abnormal.
Justin was an athlete andworked out a lot and had just
finished running a marathon, andso it was really unusual that
his hand felt weak and he didn'tthink much of it, but his neck
was starting to feel sore and wewere traditionally like I mean,
we both probably would havelike said we didn't have a
family doctor.

(07:39):
I mean we were not like doctor,people were both very healthy,
very active.
So it was just unusual.
Anyway, he went on a backpackingtrip with his buddies and while
he was out west, you know,hiking a mountain, he asked his
buddy, who was a physicaltherapist, like hey, my hand
feels weak.
And so his buddy looked at itand it was unusual to him that

(08:04):
he couldn't like recreate theweakness or make the weakness
better.
So he was like that's unusual.
Usually I can like put yourhand in a maneuver to ease the
pain.
So he was like this issomething, you should go get it
checked out.
And so, because of his buddy'syou know concern, we started
down the road of doctors anddoctor visits and we just did

(08:28):
not think it was serious thoughat all, but each doctor kind of
kept pushing us to the nextdoctor and kind of queuing more
intense testing.
And yeah, it started us downthat road for sure.

Speaker 1 (08:43):
Yeah, and Justin was.
How old was he at the time?

Speaker 2 (08:47):
Gosh, I think he was 35.
Yeah, I think like around 35.

Speaker 1 (08:54):
Yeah, which is really young too.
At this point you're not reallythinking there's anything that
could be happening.
You're healthy, You're fit,active, all the things.

Speaker 2 (09:03):
Yep, yep At this point, yeah, it was totally out
of our realm of consideration.

Speaker 1 (09:09):
we were both extremely healthy and active and
yeah didn't think much of it,so so, your husband's 35 at this
point and you guys go to thedoctor, go from one to another,
to another, and then you have anurse that comes in and tells
you what.

Speaker 2 (09:27):
So at this point we were like right around the
summertime is when testingstarted.
So we started going to doctorsand you know everyone was
looking at him saying like youare healthy, you're fine.
And each test was coming backinconclusive, which for us was
encouraging.
But I think from the doctorside they were like it's good,

(09:48):
but inconclusive tests couldmean something really bad.
So we were like, well,inconclusive means we're fine.
But we kept going and they keptsending us to more and more
specialists.
So at this point we had doneevery lab you can imagine.
We had gone to EMGs like nerveconduction tests.
We had MRIs and one doctor youknow did find some white spots

(10:11):
on his brain scans which couldsuggest MS and they threw out MS
which leveled us.
We were like we are herebecause his neck is sore and
they threw out some really scaryhealth diagnosis and so we were
like this can't be MS.
So around that time we startedgathering prayer support.
We were like listen, they'rethrowing out some scary things,

(10:31):
ms being the worst.
We think it's probably just asore neck.
But tests kept coming backinconclusive.
It wasn't a very clear-cut MScase.
So they were sending us toneurologists and some doctor
along the way, had put you knowthroughout ALSing, it's probably
not that that would beextremely rare, like 0.001 rare

(10:53):
for someone your age, so young,to get this.
So we kind of didn't give itmuch thought.
But this six-month period wasthrowing us for like I mean I
was pregnant and I was extremelywas throwing us for like I mean
, I was pregnant and I wasextremely yeah, definitely going
to a place of fear because ofwhat doctors were throwing out
and anxious about what could bewrong.

(11:13):
And then in December we went toUPenn and a doctor with pretty
terrible bedside manner we weredoing more testing at this point
came in with a smile on herface and Justin and I were like,
okay, this means good news,she's smiling.
We later learned it wasprobably an awkward smile

(11:37):
because she came in and saidokay, you have ALS, whoa ALS.
And we were leveled, liketotally confused because of her
body language.
But also we weren't expecting.
I mean we had gone through sixmonths of testing where no one
had any answers for us, so weweren't even expecting a

(11:58):
diagnosis.
But when she walked in andthrew that out, we were like
shocked.
We like had no words for her.
And so we were in Philly andthe appointment was fairly short
and she just said, like do youknow what ALS is?
And we'll get you set up withan ALS clinic.

(12:19):
And like everything inside ofus is screaming like no Like, no
Like no, we're not.

Speaker 1 (12:26):
This can't be the reality.
This can't be our reality.

Speaker 2 (12:29):
There's got to be a mistake, right?
Yeah, so that did trigger likethe thinking that this is a
total mistake and we will startripping down walls and figuring
out what this is, because thisdoctor is very, very wrong
ripping down walls and figuringout what this is, because this
doctor is very, very wrong.

(12:53):
So we left UPenn and kind of wewere like numb and in shock and
walking through.
I just remember like walkingthrough the Philly streets and
like life happening around usand people you know walking past
us in a hurried way and we werejust like holding hands and in
shock and we um, walked into acafe and sat down and like wept,
just there in Philly, in frontof everyone, we just wept and it

(13:16):
was, yeah, really like a hardreality that we like we still
weren't accepting it and westill.
But it was just like.
Those words were hard, reallyhard to hear yeah, because it's
like a first year.

Speaker 1 (13:29):
You must be in denial , like this isn't.
Yeah, like I'm hearing that shesaid that, but this can't be a
reality.
Yeah, like it, there's must bea mistake, right?

Speaker 2 (13:37):
totally, totally wow yeah, and then we just drove
home and definitely likescreamed and cursed and wept and
the ride home was really hardbecause it was like you just go
to this place and they tell youthis hard thing and then they
expect you to live after it.

(13:58):
It's like.
It's like that moment where youlike take your baby home from a
hospital.
You're like wait, you're justexpecting me to like take this
baby home.

Speaker 1 (14:04):
Like that moment where you like, take your baby
home from a hospital.

Speaker 2 (14:06):
You're like wait, you're just expecting me to like
take this baby home, yeah.
And like I had this new thingthat we had to carry and we
didn't know how to carry it andso, yeah, I mean I don't think
anyone would know how to carrythat Right.

Speaker 1 (14:16):
I mean, it's like as a shock, shock.
And then you read on and I'msure you've done a ton of
research and it's like, okay,this is what this potentially
means and is this what's goingto happen to our family?
Yeah, and what is that going tolook like?
Yeah, all of that, it's a lot,it's a big, a lot to carry.

Speaker 2 (14:37):
It's a lot.
I will say like the ride homewas hard and I would have said
it was probably my, like, numberone fear in life.
I had seen my uncle walkthrough ALS and so our first
phone call was to my aunt, whowalked with her husband through

(14:59):
ALS, and she was shocked and,you know, tried to, you know
tell me it would be okay, but Ihad seen it not be okay, yeah,
and so I called her and yeah,like I have done hard things, I
have walked with my dad throughcancer and I have seen a lot of

(15:19):
hard in the world, but watchingmy uncle, I mean that was just
the most devastating disease Icould imagine.

Speaker 1 (15:25):
And.

Speaker 2 (15:27):
I was terrified, I mean my whole.
If you had asked me yearsbefore, like what is your worst
fear in life, I would have saidALS, Wow.
And so that is Because you seenyour uncle Because I had seen
it.
Yeah, and there's a lot of badthings out there, but that was
just like my thing, my fear.
So I was like terrified andthere was like so many times

(15:53):
where I could look back and saylike man, that was the Lord.
There were hard things I didn'tunderstand in the moment where
I'm like shoot, I quit my job, Ilost my insurance, I am
starting a new business, I'mpregnant.
This is not the time to likedeal with a massive health thing
.
So you know, like there'slittle things where I'm like
okay, this is an expensivedisease they call it the

(16:13):
bankruptcy disease for a reasonand I don't know what we're
going to do.
But you know, looking back, Ican see how the Lord has like
numbered our steps and beenreally faithful.
And actually it was a blessingthat we got off traditional
insurance, because we got onSamaritan Ministries and they
covered a lot of alternativestuff which we did for a solid

(16:34):
five years.
And you know, like things likethat when, like the Lord knew
and we walked into our house inLancaster City and my sister, my
little sister and her husbandand then one of their friends
were waiting for us at our housein Lancaster City and my sister
, my little sister and herhusband and then one of their
friends were waiting for us atour house and they had brought a
friend to just be there to prayhe has his own ministry and my

(16:54):
brother-in-law and sister arealso in ministry and they were
just like, hey, we'll just waitat your house until you get home
from Philly and we'll be therefor you, and that was the day
you got the diagnosis.
This We'll be there for you,and that was the day you got the
diagnosis.
This was the day we got thediagnosis.
So we walked into our house andthey were there and we again
wept and just, yeah, we justwept with them and they held us.

(17:17):
But I'm like the timing.
More so was the way that theyheld us and then set the
trajectory for our next coupleyears I mean we that.
I consider that moment pivotalbecause they held us and they

(17:37):
wept and we prayed, but thenthey also set, helped us, set
the tone for how we would walkthrough the journey through
worship.
So they spoke a lot of reallyencouraging words into us, like
you know, talking about how,when you're in seasons of

(17:58):
extreme suffering, your worshipto the Lord is unique.
Suffering, your worship to theLord is unique, and to still
honor the Lord and worshipthrough our suffering is
precious, and it's not whatJesus would want for us.
However, if we can honor andstay true and faithful and
worship through our suffering,there is like a precious and

(18:21):
pleasing aroma to the Lord thatthey were encouraging us to
carry, and so in that moment,they worshiped over us and they
like prayed over us.
And yeah, they just like held usbut then also like encouraged
us and we were really moved bythat.

(18:42):
But that set the tone for likewhat Justin and I had said, like
this is how we want to walkthis out, like we want to
worship our way through thestorm.
That was a pivotal, pivotalmoment for us and one of our
hardest moments in life.

Speaker 1 (18:57):
Yeah, thank you for sharing that.
Yeah, so, lori, as you got yourdiagnosis and you guys were, as
, as a couple, walking it out,how did you, what did that look
like for the two of you, and howdid you guys support each other
?
How did just in the middle ofthis transition, Justin was

(19:21):
incredible.

Speaker 2 (19:23):
He had such a like like God-given faith and I
always called him my true northbecause he is just such a steady
person and just so steadyingfor me.
I tend to feel deeply and myemotions are pretty raw and open

(19:45):
and visceral, and so he gave metotal space to like weep and he
held me a lot and then hisfaith was incredibly steadying
for me.
So I just remember some ofthose early months.
The diagnosis period wastraumatizing, but then the early
months were just hard because Iwas at this point like six

(20:09):
months pregnant and lots of rawemotions.
His faith was incrediblysteadying.
But I also kicked into thislike high gear of like this is a
misdiagnosis and we're going totear down every wall and figure
it out.
So I kind of also kicked intolike heavy research mode and so

(20:29):
we, you know, got into MayoClinic and they made exceptions
for me to travel and fly, likeextremely pregnant.
I think I was like, how was it?
In January?
So I was like eight monthspregnant and you know the
doctors were like do what youneed to do?
Like everyone, like completelyunderstanding.
They were like do what you haveto do.
And so we got into mayo andcalled every single day to get

(20:51):
an appointment and because theywere like, oh, we're booked for
months and I'm like we need toget in.
So we were like tearing downwalls but, you know, heavy on
the research, we went to johnhopkins.
We went to, you know, everyhospital you can imagine.
We went to Duke, we covered theEast Coast and we were looking
for something different.
We also like surroundedourselves with community and

(21:13):
brought them in and had prayerand worship nights and, yeah, at
this point, like we were, it'sreally like I think Justin
didn't have the um, the physicalsymptoms yet I mean it was like
, okay, sore hand or a weak neck, yeah.
So it's weird when someonespeaks something over you, when

(21:34):
you're like I don't feel it yet,like you know what's coming and
what the doctors are saying andwhat they're prepping you for.
But it was easy to have faithin those moments because it's
like it's the fear of the futureand he was really good at
controlling that fear of thefuture.
Whereas my mind, you know, Iwent into full fear mode and
hadn't yet learned which I'mgetting a little bit better of

(21:57):
of like walking in today, likehe was able to say I'm not going
to let fear control me.
And it's much easier to do thatwhen you don't have the
physical symptoms yet.
And so we kind of used thattime to like steady ourselves
and support each other and holdeach other, and we did that in

(22:19):
different ways but gave eachother a lot of space to do what
each other needed to do.

Speaker 1 (22:24):
And process and I'm sure in that time too there is a
sense of grieving, right Likegrieving of a loss, of what is
to come, the changes that you'rekind of starting to experience.

Speaker 2 (22:38):
Yeah, and there wasn't like a.
I mean, they were, you know.
Now they feel so significant.
It's like almost like everymonth, we feel like the loss of
something big, but this, yeah,it wasn't everything all at once
, which is part of the brutalnature of this disease.
It's like this slow torturethat you're like, okay, that's

(23:02):
taken, now that's taken.
Torture that you're like, okay,that's taken, now that's taken.
So maybe the first thing Iexperienced was like, okay, I'm
having a baby and my husbandwon't be able to massage my back
like he did for Talia.
Like he won't be, like I hadback labor for both of them.
He won't be able to like pressmy back.
So I'm doing Like during labor,during labor, yeah, so like I'm

(23:22):
doing labor alone, it was kindof like I can do this, like this
is, this is okay, yeah, um, Istill just went just in the room
, so it was like his presencewas still there.
But that was probably the firstthing where I was like, okay,
it's a little bit um, it's justdifferent um.
And then, like you start seeingthings where, like I like his

(23:45):
coordination started going.
So, like, after the baby came,it was like, ok, justin could
hold the baby safely.
He couldn't change a diaper,you know.
So it was like I've changedevery single diaper or his sleep
was really important.
My first child of you know,justin, of course, would get up
in the middle of the night androck the baby to sleep and give

(24:06):
me a rest.
Now, for our second baby, hecouldn't change diapers, he
couldn't help in the middle ofthe night, because I was like,
no, you need your sleep, yourbody needs to fight, you fight
your battle, I'll take care ofthe baby, like.
So there was just like a thestart of a transition, of like
how we like did responsibilitiesdifferent.

(24:27):
So that was kind of how itstarted out At the same time.

Speaker 1 (24:32):
that's a lot of weight on you too.
How did you navigate?
Having more responsibility fallon you, naturally, as the
result of this being part ofyour life now and you mentioned
community was a really, reallybig thing.
And I think community is soessential, just for all of us,

(24:53):
no matter what season of lifeyou're in, but especially when
you're facing somethingdifficult.

Speaker 2 (24:59):
Yeah, I've definitely gotten better at letting
community in and help.
That was really hard in thebeginning.
And there's also this likereally interesting like you know
, I had to do the research, Ihad to do doctor's appointments,
like there's certain thingsthat you just can't pass off.
So in the beginning it was likeI have to be the one to research
and I have to like nobody couldtell me which clinical trial to

(25:21):
enter.
You know, there's certainthings that I had to be the one
to research and I have to likenobody could tell me which
clinical trial to enter.
You know, there are certainthings that I had to do.
But yeah, our community ralliedin like the most amazing ways
and I think it's just atestament to who Justin is and
like he had a very strongcommunity and support system and

(25:42):
we both have amazing familiesthat rallied around us as much
as they could in remarkable ways.

Speaker 1 (25:51):
Yeah, yeah, think the two areas that get hit the
hardest um.

Speaker 2 (26:16):
I love my husband deeply and it's brutal to watch
the person that you love likesuffering and not participate
the way that you know he would.
He wasn't as an amazing husbandand father and I like I know how
it's killing him to not beinvolved the way that he would

(26:40):
with both our kids and in ourrelationship.
So probably the hardest thing isjust watching him not be able
to participate and losingrelationship.
We have like fought so hard tomaintain connection and
relationship, because you hearall the horror stories of,

(27:03):
because you hear all the horrorstories of what this disease
does and it's like I mentioned,it's called the bankruptcy
disease for a reason.
Like it steals everythingslowly and we have been like
really committed to trying notto let it steal relationship,
which has always been likerelationships are the most
important to us, like our peopleand each other, and so we have

(27:24):
put so much energy and effort.
But there is like that realityof like when you can't use words
to communicate, or you can'ttouch, or you can't hold or yeah
, like there is just this lossof relationship.
That is natural and that isnatural and that is brutal.

(27:48):
And our kids don't like know somuch of what they're missing
because they're just kind ofalong for this ride and they
know what they have.
But it is brutal because I knowwhat they're missing.

Speaker 1 (28:03):
Yeah, yeah, and you know the Justin, the healthy
version of Justin, yeah, thevibrant, the active version of
Justin, so seeing himdeteriorate before your eyes is
just yeah, yeah Brutal.
What's another really hardthing for you in this season?

Speaker 2 (28:23):
I would say like parenting through this has been,
like it's more challenging.
So in the beginning it's like,oh, I have to do diapers by
myself, Not a big deal, you know, like there's those physical
things that you know it's notgenerally the physical things
that actually feel hard.
I mean, this is hard work butit's not that hard, but it's not
that hard.
I think the hard things are theemotional things where it feels

(28:53):
a little bit like singleparenting some days.
But even that is like singleparenting feels a little bit
different because I'm alsocaring for this adult human with
adult emotions and adultlimitations, with adult emotions
and adult limitations.
But parenting is reallycomplicated because I'm so
limited in, I feel like, what Ican give, Whereas in most

(29:15):
scenarios I would say your kidsare generally the priority.
If they need something, Sure,I'll help you go get that cup.
In our home it's often the kidsyou know.
I'll say like, hold on, I'llget you that cup in a second, or
I can't take you on a hikeright now, this isn't a good
time because of bathroom orshower or you know no one's here
to help or no one knows how tohelp or limitations with that.

(29:38):
So I think parenting is hardbecause I also know what I would
have been able to give and I'mreally limited and that kills me
as well.
Yeah, and how old are your kidsright now?
Yeah, they're six and eight.
Okay, so we kind of trackJustin's diagnosis almost with

(29:58):
Benny's age, because I gotpregnant almost like the same
month that Justin startedexperiencing symptoms.

Speaker 1 (30:05):
So, yeah, yeah.
So how do you stay sane throughall of this?
Because that's, as youmentioned, a really heavy load.
How do you navigate?
I don't want to use the wordbalance, because I don't even
believe the word exists really,especially in this situation.
But how do you navigate, tryingto also take care of yourself

(30:25):
and fill your cup while you haveto give so much of yourself to
your kids, your husband andyou're like, really involved in
the community?

Speaker 2 (30:40):
May I add, she runs her own business and other
things too, and projects.
And yeah, how do I say same?
Well, I think it depends on theday day.
I mean, I think if you walkedin my house a few days ago you
would have been like Lori'slosing it and then some days you
walk in and you're like, wow,this is a really great space.
So, you know, I think it dependson the day.
I think like long-sufferingjust has this way of like

(31:01):
leveling you some days and thensome days we're like we're doing
all right, like we're likewe're like we're doing all right
, like we're like we're doing it.
We're doing the hard thing.
I am still like a pretty firmbeliever in like feel all the
things and I'm like an externalprocessor, but I I do that a lot
with myself.
It's hard to like say all thethings and put extra on Justin,

(31:24):
although he is like a reallyamazing listener and you know
moments I will just be like thisis hard because of all the
people in the world.
He understands.
You know our situation the best, but I also try and like be
sensitive to as much as I'mfeeling and experiencing.
It is harder and worse forJustin.
It is harder and worse forJustin.

(31:50):
So I'm like sensitive to that.
Um, but yeah, I still feel allthe things and there are days
where you will find me on mybathroom floor, hysterical and
and just done, just like tirednot of the physical work, but
tired of the battle for life,and we fight so hard every day

(32:11):
to stay in a space that stilloffers hope when you don't have,
like earthly, physical hope.
So the battle is exhausting,but yeah, so I still feel like
feeling all the things.
And there are days and we giveeach other space where it's like
he's having a hard day.

(32:32):
I'm going to carry him todayand he does the same thing, and
probably the most it changeslike what's helpful in each
season, which is where, likehaving you know, an awesome best
friend like Justin is helpful.
But he's been maybe for monthsnow writing out this prayer and

(32:55):
he knows when I'm done, but orI'll tell him when, like he can
probably see it but.
And so when we're just like wejust need a minute and it's
usually after the kids go to bed, but yeah, you could walk into
our house and be like, oh,they're having a minute, he will
put on this prayer and he can'tspeak the prayer out loud, but

(33:18):
he has typed it up with his eyeson his computer and it's now
like a eight minute prayer,maybe 10 minutes now, and he
keeps adding to it, but it'slike the words of life that he
speaks over me and touches.
It's like that's life-givingright now.

(33:39):
Yeah, like that's life-givingright now.
Yeah, you know his words meaneverything to me and so it's
just man, like he's still thesetting force and he's still
bringing us back to our kneesand still orienting our eyes to
God.
And there's not a lot of wayshe can do that, but this prayer

(34:00):
is a way that he still taps into, that it helps orient our
family and it's still holdingspace for you.
Yes, I usually just sit on acouch and cry for the whole
eight minutes of the prayer andthen there's no words after that
.
It's just like this is hard andit's hard for Him and we don't

(34:23):
have answers.
But we're still going to likehold each other and we're still
going to walk forward and we'restill going to like trust Trust
in the fact that we don't knowwhat God does.

Speaker 1 (34:38):
Right, right, what do you wish people knew about?
Either your situation orsituations like yours, because I
feel like people may see yourfamily from the outside and make
assumptions.
Right, like you said, oh,they're doing really great.
Laurie's doing all the things,she's pulling it together.
Look at her, go right, orwhatever that may be.

(35:02):
What do you wish people knew?
Because I really think that, um, in reality, a lot of people
have different struggles, right,and they may be visible, they
may be invisible, yeah, and whenwe see families or people,
whether it's their christmascards or social media or

(35:24):
whatever that may be, mostpeople look like they have it
really together.

Speaker 2 (35:29):
Yeah, it's like a snapshot of a moment and
everyone's smiling and wedefinitely have those.
And then we definitely, youknow, I have those moments where
I'm like you know we haveinvited our neighbors in and I'm
like you can walk into ourhouse.
But when you walk in, know thatit might not be like everyone's

(35:50):
happy.
It might be that we are all intears right now because
everyone's dealing with thisdifferently.
And you know, sometimes we'relaying hands on Justin and my
kids are there and we're praying.
You know I could be having agreat moment and managing all
the things and everyone's fedand everyone's gone to the
bathroom and everyone's showeredeveryone's happy.

(36:10):
You know, like that could be thesituation or it could not be
the full story.
I guess is what um is true formost people in hard situations

(36:35):
where if you could, as like thehuman race, if friends could see
that and they have in the mostincredible ways.
But for people walking throughhard, I guess my encouragement
would be like lean into the hardand know that one smile is not

(36:57):
indicative of the rest of theday.
And when you're walking throughhard it's incredibly isolating.
I mean I know everyone walksthrough hard, but we don't have
a single friend in our proximitywalking through terminal
illness for seven years and it'snot just grief and death in a

(37:18):
single instant, it's like losingsomething every month and that
is so much grief and we don'thave a similar situation.
So it's incredibly isolating.
And so if you can lean intothose that are feeling isolated,
even if they are completelysurrounded I mean people joke

(37:39):
that my house is like arevolving door I mean there's
always people at my house andthat brings us life, because
we're already isolated in oursituation.
So we don't want to bephysically isolated, but if we
could lean into the hard andthen a lot of grace to realize
like what somebody needs, yearone might not be what they need,

(38:03):
year seven or building arelationship with Justin.
We just had to, you know, kindof make this clear that building
a relationship with Justinright now does not mean like
going for a hike in the woodsRight or even being social at a
neighborhood party.
Building a relationship withJustin right now means knowing
how to move his hands onto thetrigger of his wheelchair or

(38:26):
knowing what his eye means whenhe looks at his leg.
So it's like knowing his cuesand being helpful to him
physically because he's in astate of uncomfortableness.
So like being in relationshipjust looks so different.

Speaker 1 (38:42):
Yeah.

Speaker 2 (38:43):
And our human needs haven't changed.
We still need people, we stillneed relationship, but like
being the kind of friend thatchanges with the changes, which
is so full of grief for friendstoo, but like leaning into the
hard, knowing that relationshipmight mean not having the deep
conversation he would have hadfour years ago, but watching a

(39:05):
movie and just being present.

Speaker 1 (39:08):
Yeah, that is a gift right To sit alongside someone.

Speaker 2 (39:13):
Yeah.

Speaker 1 (39:13):
Sometimes you don't have to use words, you're just
being present, in the middle ofjust being there.

Speaker 2 (39:19):
Yeah, presence is huge and you almost don't get
the fuller picture until youspend the time being present.
I think that's true of allrelationships.
I mean, the more you get toknow, it's like you know their
life, you know their kids, youknow their work, you know what
makes them happy and sad, and Ithink that's like same with us.
It's like, until you reallyenter in and spend time, it's

(39:40):
really hard to know the fullscope of what you're dealing
with.

Speaker 1 (39:45):
Yeah, so your house is a revolving door, it's an
open.

Speaker 2 (39:48):
Do you have an open door policy?
Yeah, yeah, it is usually opendoor policy, so you have a
warning where, like you may seethis, you may see that as you
said just be aware.
Yeah, there's like times that wedo try and carve out like
family time, like our life isreally unique in that, like we
have to almost like plan, to beintentional and plan Like these

(40:12):
are the hours that we're tryingto do something as a family,
because these are Justin's besthours, so he might have the most
energy in the morning andenergy might be like he's still
just watching the kids play, butprotecting that as a family.
So we do have like a fewboundaries to just be like this
is Justin's best time and so weneed to save this.
Even if he's not participatingbut he's watching right now,

(40:35):
that still feels precious and wewant to like save that for him.
So, yeah, for the most part,there's a lot you know a lot of
people in our house also, justbecause we need a lot of help
mm-hmm, what is currentlyencouraging you right now, or

(40:56):
what are you holding on to?

Speaker 1 (41:02):
I should say, what's bringing, giving you hope?

Speaker 2 (41:05):
Yeah, what's encouraging you, Justin, and I
are.
We love learning and we lovelearning together, and so I
would say we just finished thisministry school at our church
and we've taken severaldifferent classes just to keep

(41:25):
learning and growing in ourfaith.
But we don't have a lot ofphysical hope and we haven't
since diagnosis day.
The physical hope is notpresent and as we've seen more
physical decline in his body andas we've seen more like
physical decline in his body,that gets stripped away real
quick.
But I think we're leaning intoour faith because that is what

(41:48):
we have to stand on and we knowthat miracles happen.
God can do the impossible andeveryone does not get healed,

(42:16):
but we know that God can healand so leaning into our faith
and then building that up isprobably like the biggest thing.
That just that's like ourbiggest strategy, our biggest
resource.
Where we're, like God has toldus from day one to abide and
stay close and it's kind of likein his shadow is where we can
find peace, because our earthlyreality is so daunting and like
full of hard and so like leaninginto the only thing that could
bring peace is kind of wherewe're landing yeah, and you have

(42:36):
a page called Walking Uphillyeah.

Speaker 1 (42:40):
Can you tell me what that means and how that was
created?

Speaker 2 (42:44):
Yeah.
So we created a little blogcalled Walk Uphill, and the
words are significant.
Justin felt like he got a wordearly on in his journey that we
were going to have to walkuphill.
So he got a verse Isaiah 49, 11, and it just encouraged him
that God can level the mountain,god can make the path straight,

(43:05):
but we're going to have to walkuphill and we don't have a lot
of clarity on that.
I mean everyone asks like, well, does that mean, like you know,
you're going to get to the topof the mountain?
And then we're like we're justwalking uphill.
I don't know.
We're just like taking one stepin front of the other.
But yeah, all mountains have apeak and we hope that we're like
we joke now that we're summitseekers Like we are just looking

(43:28):
to get to the top of's writing.
So he has a computer and he useshis eyes to type, and so he
spends a lot of time at hiscomputer and will write down his

(43:49):
thoughts and suffering has thiscrazy way of stripping away the
American dream and our struggleand our dreams and our desires
and replaces it with a much morerefined version of what's
important in life.
So we've been.

(44:09):
It's like the hardest thingwe've done is just like
stripping down everything wewant, stripping down everything
we know, stripping who wethought we would be as parents
or partners or friends, and it'slike letting go of everything,
and not even like letting go,but almost like it's taken so we

(44:31):
don't really have a choice.
It's like no, it's beingstripped.
And then rebuilding almost amore solid scaffolding of our
faith that can, like uphold usbetter than any other
understanding of our faith, thatcan, like, uphold us better
than any other understanding ofour faith.
So so, just rebuilding this likesturdier structure for our
lives that wasn't dependent onmoney, that wasn't dependent on

(44:53):
our jobs or where we traveled toor you know how many friends we
had.
It's like we are stripped downand we are redefining what's
important and we're, you know,trying to live into that, which
is really hard because we feelincredibly limited.
But realizing like God's notasking for us to travel the

(45:15):
world or start all thebusinesses or have all the money
, like what he wants is ourobedience and our fellowship and
communion.
And so we're trying to, like mysister wrote this really
awesome song where ourfellowship is the reward Like
realizing like fellowship withthe Lord is the priority, like

(45:36):
that is the goal, that is myreward, and letting that be
enough in life, which takes alot of undoing, and we're not
there yet, because every day isa struggle, but that is like our
, our focus.
So would you say that yourapproach is just taking it a day
at a time, or yeah, yeah, I uh,we we have been naturally

(46:01):
stripped of some of ourlong-term goals and we were
definitely goal-oriented peopleand we would sit down in a
coffee shop and plan out goalstwice a year and we were, was
like in us and we loved workingand building, and so we're not

(46:25):
quite doing that anymore.
But yeah, our strategy isn't.
We don't really have like thefive-year strategy or the
five-year goals.
Right now we're like we arejust going to abide with Christ
and ask Him as daily as we can.

(46:45):
Like, lord, how can we honoryou today?
How can we serve you today?
Let us focus on what'simportant today and we, you know
, suit up metaphorically and try, and, you know, suit up with
our spiritual armor and try andget through the day, because we
don't have all the other thingsto rely on.
We don't have our goals, wedon't have, you know, the

(47:08):
stability that we had or that wewere able to build for
ourselves.
We are living in like a placeof trust and sometimes we do
that well and sometimes wereally fail and we are on the
bathroom floor weeping forourselves and feeling a lot of
pity and a lot of anger.

Speaker 1 (47:28):
A lot of real, raw human emotions right, it is all
real.

Speaker 2 (47:31):
Yes, we give ourselves the space to do that
because it is real and it ishard and life is trying and life
is trying, yeah, yeah.

Speaker 1 (47:42):
Well, I love.
First of all, just I'm sothankful that you're sharing the
story and I know peoplelistening are going to be
encouraged, because you're areal human who's experiencing
some really raw, really hardthings, you know, and you're
doing the best you can andwalking it out day by day.

Speaker 2 (48:01):
Yeah, I'm day, yeah, right.

Speaker 1 (48:02):
And trying, yeah, and it's.
I think it's encouraging toknow that you know from day to
day can look really differentand that it's not all peachy and
everyone has the kind of thevariation of what that could
look like from day to day, andthere's days that you're

(48:23):
discouraged and there's daysthat you may feel really
encouraged.
Right, and that's okay too.
There's nothing wrong with that.
It doesn't mean your faith isless than and whatnot.
Are there things that you arecurrently reading that is
encouraging you currentlyreading?

Speaker 2 (48:45):
that is encouraging you, or?

Speaker 1 (48:47):
Yeah, I tend to read really intense books, I can tell
you're pretty deep, you know.
I think the truth of the matteris is that when we're stripped
of everything and there's noother way to control the
situation, right, would we ashuman beings love to like see
how much we can impact thesituation in our favor?
That's a natural desire.

(49:09):
But when you don't have theability to do that, it takes you
to a place that's hard and alsoreally beautiful, and I don't
say that lightly, because youknow, even just thinking of my
grandmother and the gulag right,you have everything stripped
from you.
The only thing that you controlis how you handle that

(49:30):
situation and what you think.
Your mind, your faith, all ofthat and some of the best works
have been written by people whohave spent enormous amount of
time in isolation in prisons,whether it's Nelson Mandela or
people who've been throughAuschwitz like in search for
meaning.
Yeah, because there's somethingthat they can give us, the rest

(49:53):
of the humanity, that maybe wedidn't have to go through those
depths to experience.

Speaker 2 (49:58):
Yeah.

Speaker 1 (50:00):
But they can speak from that place.
Yeah, and that's why I saybeautiful, because it's rare,
especially living in theamerican culture, in our society
, in the western world, whereeverything's at our fingertips,
you know, you can have the thingtomorrow that you order right
and we have access to so much,and when you don't have access

(50:21):
to change a certain situation,you don't have a way to make a
difference.
So that's to me, that is why Ireally wanted to have this
conversation with you on thepodcast, because you bring
something that is so unique andis such a gift for people
listening, and I know thatyou're still in the middle of

(50:43):
your heart, like you're still init, but thank you for just
you're honest and you're realyeah, justin would still say
like sometimes we check in witheach other and we have to like

(51:03):
keep things light, and so wehave a lot of you know still
inside jokes and stuff that likekeep things light and you know,
um, but he would still say likehe wouldn't go back.

Speaker 2 (51:15):
The things that we've gained in this fire are
precious and you can't reallyget without going through the
fire, and so, like he would sayhe wouldn't go back to his other
career Like he's.
He has something we both have,something that's been like

(51:36):
forged, that is precious and wemight not have gotten it without
.
So I think we could do withoutALS.
Like we're like Lord anythingelse would be really great.
Like we're ready for thisseason to be done, Like we are
ready for ALS to be no more andgone, but what we have gained is

(51:58):
really precious, and like wetry and remind each other of
that on some of our hard days.

Speaker 1 (52:06):
But, yeah, yeah, if there's something that you could
pass on to a listener who maybe going through a really tough
time maybe they're in asituation that's also outside of
their control.
For whatever reason, what'ssomething that you'd love for
them to know from walking yourwalk?

Speaker 2 (52:33):
I mean, I guess, a few things that I would think,
um, like allowing your communityand will, like literally save
you.
Um, and we've like oftenthought, like how hard would
this be if we didn't have ourpeople surrounding us?
Um, so like finding ways to letyour community in, to love you,

(52:59):
which is extremely hard, andwe're still struggling through
like gosh, feeling so humbled bythe fact that people still want
to surround us and be present.
You know, trusting in the HolySpirit, and like trusting in,

(53:29):
like guidance that you can'treally get through.
Earthly wisdom I mean earthlywisdom has told us that, like we
are done.
I mean doctors would literallytell us, like you know, the
first day of ALS clinic, it waslike you have two to five years
like get your affairs in order.
They told us all the hard things, like get a lawyer go write

(53:51):
your will get, like you know,preparing for death and and yes,
those are all real andpractical things that we have
done.
But also like trying to liveeach day for, like, what is
today going to, like what can itoffer?
And then, how can we continueto exude love and how can we
continue to be present forpeople, the things that are also

(54:13):
part of human, like caring formy husband.
This is being human, this is apart of life.
So how do I still be presentand show up as a human, doing
some of the things that arereally important, like loving
the people around me, even ifit's just inside my four walls,
or being excited for a neighborthat just found out they're

(54:34):
pregnant, or, you know, paintingat my sister's house, or you
know, doing things that stillshow up for other people?
It's really important to me tonot just become insular and
receive the help, but also stillfind ways to like love and do
things that are human, like.
This is life, and if I don't dothose things, that I lose out

(54:56):
on, you know some of the thingsthat are available for me.

Speaker 1 (55:00):
Yeah, yeah, that's so beautifully said that.
What I've got out of that, too,is what you said, is that be
willing to receive help incommunity but also continue to
be a contributor in some ways.
That's within the means too,yeah.

Speaker 2 (55:16):
And they're hard.
It is so hard to receive help,like I'm not saying these are
easy things, but also continueto be a contributor in some ways
that's within the means to them.
And they're hard.
It is so hard to receive help.
Like I'm not saying these areeasy things.
Yeah, because to receive helptakes a lot of humbling.
And then also like carving outspace, like to go to a friend's
I have to line up care and makesure my kids are okay and like I
have—it takes a lot of planningto like give, but to me it is

(55:39):
so worth it.
It is so necessary andimportant to keep showing up for
my family and others.

Speaker 1 (55:47):
Yeah, that's so beautiful.
What are some pivotal books?
In your life, hmm.

Speaker 2 (56:01):
Like I said, I've clung to some pretty intense
ones because I think I also amlike learning from people who
have walked through some reallyhard scenarios.
So I you know again, that'sprobably just a personality
thing because I'm like somepeople in hard would probably go
like I need to read lightthings, things.
But I have leaned into, likeViktor Frankl's search for
meaning where he walks through,like how he found significance

(56:23):
in life in a prisoner war camp.
You know, like that has beenreally encouraging for me
because I'm like okay, I saythat I have hard.
They also have extremely hardor like more hard, and they are
finding ways to like live andwant to live and love.

(56:43):
So that book is something thatI've tried to read every year.
The Bible I'm clinging topretty hard these days yeah, I
don't know Mostly books ofpeople who are like overcoming.

Speaker 1 (57:04):
Yeah, which I think is encouraging for us to know
Like people have done hardthings and you can walk this out
as well, and you know yourstory is going to be unique to
you and it may look reallydifferent from Viktor Frankl,
right?
But at the same time, there'suniversal threads that are that
resonate with us.
Yeah, yeah, laurie.

(57:26):
On a practical level, how cansomeone support you or someone
in a similar situation?

Speaker 2 (57:33):
Yeah, well, I feel like my community has been the
biggest teacher on this one.
So my community has taught meso much on how I can love others
well, by example.
So I'm learning so much from mycommunity.
But probably the biggest thingis like when friends have

(57:54):
reached out, making suggestions.
So, rather than being like, letme know if you ever need help.

Speaker 1 (58:01):
Ooh, don't say that, yes, let's just clear that up
right now.
Don't say let me know if youneed anything, I'm here Cause.
What is your response whensomeone says that, naturally
Right, you're like I'm good,yeah.

Speaker 2 (58:13):
Yeah, we're like, well, we're okay, is that
naturally right?
You're like I'm good, yeah.
Yeah, we're like, well, we'reokay, we're doing fine.
Or like everything inside me islike I need so much help I
don't even know what I need.
So when friends have been sogracious to be like, hey, I know
you don't know what you need,could I come over and clean your
kitchen on Monday night?
And that I probably said no tolike the first four times they

(58:37):
asked.
And then you know, persistentfriends who love so well will be
like how, about this week?
And then it's like, sure, sure,come over.
And in my mind I'm like I'llclean with them, it'll be fine,
like I'll just clean with themand talk.
And then it's like, you know,when you realize, wow, that
actually was really helpful,because now I can go do bedtime

(58:57):
and then when I get out ofbedtime I don't have to clean my
kitchen and then help Justininto his bedtime routine, it's
like I just gained time and myfriends have said like we want
to give you time back.
Time is what you don't have.
So, like you know a friend, myneighbor, every time she goes
food shopping she's like whatcan I get you?
I'm headed to Whole Foods andI'm like, no, no, I'm fine, but

(59:19):
then I'm like, actually we'reout of milk.
That would be really helpful.
So like having people in mycorner who are consistent, so I
would say like practicallyhaving consistency is really
helpful so I can plan my lifearound.
I will at least have milkbecause my neighbor Lauren will
be going to the food store, or afriend goes to Costco and will

(59:43):
ask every time she goes toCostco, or I will have a clean
kitchen once a week becausefriends are coming over.
So practically offering upsuggestions has been really
helpful, because usually I'mOffering up suggestions has been
really helpful because usuallyI'm like too overwhelmed to even
know what I need.
Or like we have these amazingfamily members.
Like Justin's aunt brings fruitevery week.

(01:00:04):
She cuts up fruit and bringsmixed fruit to us every week,
and then his mom will do laundryfor me.
Every week she will pick uplaundry and now she just goes
back and gets it herself.
And you know, it's just amazingto have these like consistent
pieces in my life where I'm likeI can count on you and you're
loving me in such a practicalway.

Speaker 1 (01:00:26):
And having that rhythm of okay, like you said,
you can revolve your life andyour schedule around.
Like you know, his mom iscoming to do laundry, say, on
Friday.
And your friend's coming toclean your kitchen on Monday, so
you can be like, okay, I knowlaundry's going to be done,
we're going to have freshclothes on Saturday.
So what do I wear today?

Speaker 2 (01:00:44):
All the things right, friends bring.
There's like I'm like, oh man,there's so many examples of ways
that people have, like,surrounded us, like we have a
group of friends that bring usmeals every Wednesday.
So like I'm like, we are eatinga good meal every Wednesday
night and you know, you don'thave to cook that day.
I don't have to cook.
I mean, I forget everyWednesday.
But then they text me like afriend just texted me.
I was like, I'm bringing it.
I'm like, oh my gosh, it'salways like the best surprise.

(01:01:10):
I mean, I don't know how I'mlike what a good surprise.
Every week it blesses me.
Yeah, there's so many things,Like his neighbor, like our
buddy Ben, comes over to stretchhim, you know, once a week, and
then his other buddy comes overto stretch him every Saturday
and there's just like theserhythms that I'm like I really
count on them.
So if my I guess myencouragement, I mean, and this
has taken it sounds like I likehave it together, but no, I

(01:01:31):
guess my encouragement, I mean,and this has taken it sounds
like I like have it together,but no, that's taken like a full
seven years to actually say yesand figure out what's helpful.
But if you're in a positionwhere you're like I could use
help, it is probably worth theeffort to sit down and, yes,
maybe someone can't make medicalappointments for you, but maybe

(01:01:51):
someone else knows how to dolaundry, Like identify the
things that, like, anyone coulddo for you and that's something
you can take off so that you canfocus on.
I mean it allows me to like doour insurance and our taxes and
our bills and make appointmentsand so letting people I mean
it's so hard to do, but it hasbecome part of our rhythm to

(01:02:16):
like let family and friends dosome of these things and it is
humbling, it is hard I'm notsaying it's easy, you know, and
his aunt comes over to stretchor like to care for Justin twice
a week and she has done thatfor years.
I mean, just like these peoplethat are stepping in and doing
things that are such a blessing.
I mean there's so many peoplethat I could highlight that just

(01:02:37):
love well and have shown me howto now love other people.

Speaker 1 (01:02:42):
Yeah, it's amazing, that is beautiful.
I think the other thing, too,to keep in mind, as you're
receiving help, is sometimesit's just as much as a gift for
the person doing it, becauseit's blessed.
It's more blessed to give thanto receive.
Right, there's that statementand we want to be givers, right,
like you, even saying like, hey, I know I don't only want to

(01:03:03):
receive.
Like I want to be able to giveto my community as well, even
though I'm going throughsomething hard.
Like if you take that away fromme, I will feel like I'm not
operating in.
Like the fullness, like itfeels confining, it feels like
like I want to be a value toothers as well.
Right, yeah, so when someone'sasking to help you, for them,

(01:03:23):
that's a gift.
It's so hard.

Speaker 2 (01:03:25):
It's so hard.
It's like hearing you say I'mlike, oh, they all say that, and
it's like it is hard to accept,but it's, that is what they say
.
And I know it to be true for metoo.

Speaker 1 (01:03:34):
Well, congratulations .
You are accepting it now.
Sounds like it took you a bit,but you are there.
It took me a bit, but yeah,hopefully, to those listening,
this can kind of speed trackyour receiving of service from
others.
So you mentioned too that thedoctor's diagnosis have been
three to five years.

(01:03:55):
Right Was kind of the thing.
And then you guys have kind oftaken on your own avenue of
looking for answers.
You did a big deep dive intowhat you know and Justin is what
, on year seven now since thediagnosis, yeah, we're at about
seven years since symptomsstarted.

Speaker 2 (01:04:30):
Yeah, we're at about seven years since symptoms
started.
So, yeah, we definitely wentdown the track of like your body
is remarkably, you know, godhas made our bodies in a really
remarkable way to recover.
So we really tried tounderstand the different
pathways that were beingtargeted by this disease and so,
you know, it was really cool.
Also, I got to know a doctorfrom a local practice and they

(01:04:51):
would like come over and sitwith me because their family was
also walking through ALS.
So we would like put our mindstogether.
We both did tons of research,so we would like sit down
together and, like over a glassof wine, just research and talk
through.
Hey, this is a pathway we wantto target.
What could we do to target thatpathway?
If cells need activating, whatare the top ways we could

(01:05:14):
activate cells?
If neurons are dying?
What are the top ways we couldactivate cells If neurons are
dying?
What are the best ways that wecould regrow neurons?
And so we would like look atthe pathways targeted and then
try and do some research on howwe can be effective to rebuild
or regain anything that was lost.
So we did a lot of supplements.

(01:05:34):
We did and we've doneeverything from the range of
like you know really you knowhippy dippy things to like
pharmaceutical clinical trialsthat haven't been tested yet,
and we were like very open toall of it.
I mean, it had to.
I think Justin's onlyrequirement was, like it has to
have scientific rationale.

(01:05:54):
Like don't do something if itjust doesn't make sense.
Like we need to have somethingmake sense because we have
limited time.
Doctors give you like two tofive years and so when you're on
a clock you just don't want towaste your time doing things
that like aren't are going to bea mess, proven or scientific at

(01:06:16):
all.
So, right, we feel like, but wehave done the range of things.
Um, you know that some error onthe side like side of like
quantum physics versus you knowpharmaceuticals, but um, we have
it's hard to and it's this iswhat everyone, like doctors have
a hard time saying.
Like this is effective, becauseit's hard to pinpoint, because

(01:06:37):
you know they would encourageyou.
Do one thing at a time, so youknow it's helping.
And then everyone in the ALSworld is like we don't have time
to do one thing at a time, liketo waste six months just trying
one supplement.
So most people, you know, throweverything against the wall and
try 15 things at once and theydon't know what is the thing
that's helping.
But Justin and I were like weactually don't care what's

(01:06:58):
working, we just want somethingto work, like we'll do all the
things that make sense and we'llstick with it.
But we have done like reallyheavy detox protocols.
We have done pharmaceuticals.
We have tried like naturalherbs.
We have tried.
Yeah, we were in a clinicaltrial that sadly just ended,

(01:07:21):
which we're really sad aboutbecause we think that there was
a lot of promise to that drugthat was being developed.
But yeah, we've tried the range.

Speaker 1 (01:07:31):
Yeah, I always wrap up my podcast by asking what is
the bravest thing that you'veever done?

Speaker 2 (01:07:41):
So to that I would probably say staying is like the
bravest thing.
I did write a blog on thisaround our anniversary and just
staying, I mean, we have seenfriends just walk away and we

(01:08:06):
know people in our ALS communitythat are like it's just so nice
that you have someone on yourteam that has decided to stay.
A lot of people get thisdiagnosis and get divorced
because it's too hard and it istoo hard.
I mean yes, I will vouch.
This is too hard for anymarriage, but I think the

(01:08:27):
bravest thing I've ever done ischoosing to stay when this is
not what either of us picturedour marriage to be, or parenting
or life in America.
I mean, this is like sodifferent from everything we
envisioned, but like choosing tostay every day.

Speaker 1 (01:08:49):
Yeah, I mean, when you get married right, you do
your vows through sickness andin health, and you didn't
imagine this would be your liketoday.
This would be your reality.
Yeah, no way, yeah.

Speaker 2 (01:09:06):
I also would say like one of the like, most
beneficial things that I thinkwe've done in the parenting
world is like I have reallybuilt up Justin to our children
and I don't.
Well, actually, it's kind offunny.
We joke all the time becausenow our kids have such a built
up picture of Justin thatthey'll ask me questions like

(01:09:28):
mommy, could daddy lift thishouse?
And I'll look at Justin becausewe're laughing, because I'm
like oh, we have built up quitethe picture of you.
But they've seen pictures ofJustin like jacked, with huge
muscles, and you know he coulddo very amazing things, like he
could walk on his hands up asand dune and he could bench 300
.
Like he was just a prettyremarkable guy.

(01:09:49):
So yeah, I tell my children allthese amazing stories of their
daddy because you know he can'teven lift his hand or a finger
right now, so they're seeing adifferent version of their daddy
.
However, it is remarkable howchildren like they are clinging

(01:10:10):
to this version of Justin.
That is true, I'm like Justinis remarkable and I tell them
all of the stories of theirdaddy, but now they're like I
mean, they think he is Superman.
And a lot of times I'm likeguys, could you just treat me
like you treat your dad, likeyou are so gentle and so kind
with your daddy, but like youare brutal to me, or like I.

(01:10:31):
You know, now we also joke likeif our kids aren't listening to
me, I'll be like daddy juststarted counting and they like
run to attention.
They're like oh my gosh, daddystarted counting.
Like they run and it's likeJustin and I will just sit there
and laugh because I'm like Ican't.
Like you didn't count, I just Ijust said that.
Like yeah, you said one.
And they like hop to it.
Um, but they have such a deeplove and respect, which is

(01:10:54):
something we also were likevery—like we desired that for
our children.
We're like we don't wantjust—like he cares deeply for
his children.
I don't want you to loserelationship.
You are—everything is going tolike tear your relationship
apart and I really want to likekeep it Like I want to do
everything I can, and so weinvolve them a lot with like

(01:11:15):
praying over Justin and I like Ithink it is a valuable thing to
like build up when the entireworld is showing them that daddy
can't do things, like trying totell them stories of what he
could do or what he wants to doand we share that a lot Like
it's breaking daddy's heart thathe can't go out there and ride
your dirt bike with you or teachyou that.

(01:11:37):
Um, like explaining to them likethis is hard for daddy that he
can't do it.
Um, so we are really honestwith our kids and we've been
really intentional to build upthis perspective of their daddy,
and then we just we just laughbecause they I mean, they think
he is like a like uttersuperhero, superhero which is,
which is beautiful, and Iwouldn't want it other way.

(01:11:59):
Sometimes it like falls back onme where I'm like, you know,
not as cool as their daddy, butit's fine, it's, it's you know
where I would want it right now.

Speaker 1 (01:12:08):
Yeah, that's so beautiful and that's something
that took effort to cultivate.
It didn't just happen, which isimportant to notate.
Yeah, um, and you mentionedseveral times throughout this
interview that you've continuingto have relationship adjustment
has been of utter importance toyou guys.
Um, and in what ways have youdone that, which you know

(01:12:34):
obviously looks different thanseven years ago?

Speaker 2 (01:12:37):
yeah, um, it's changed a lot and we're trying
to just be like reallyintentional in each season, like
do what he can do.
Um, so, like even two years ago, you know, it was changing
family and relational activities.
So last year was like thesummer of walks with the kids,
so he would ride in hiswheelchair and the kids would

(01:12:59):
bike and I was walking, so I wasthe one that couldn't keep up,
but he was able to keep up withtheir bikes, and so last year
was the summer.
This year he can't handle thetemperature changes outside, so
we aren't doing family walks butwe are protecting morning time
and he can't participate but hecan watch and that's still
important.

(01:13:20):
So we're just trying to hold onto what we can and in our
relationship, like our marriage,it's involving each other in
important conversations andmoments and decisions and then
giving Justin certain thingsthat, like he can do, like he
can research on his computer, hecan still make specific

(01:13:42):
financial decisions and I mightbe handwriting out checks, but
we're still making decisionstogether and that's really
important for us.
We are still praying togetherand deciding things together on
how to love other people and howcan we give to other people,
and so I don't know, each seasonis different, but it's kind of

(01:14:03):
like, hey, if this is what wecan do, then let's lean hard
into that, for both the kids andrelationally.
And then I have been trying toget rid of certain things where
I'm like I really want to getback to just wife, like I want
to give away some of these tasksthat make me feel more
caregiver than wife.
So we are trying to figure outsolutions for you know, certain

(01:14:27):
things like, okay, I haveshowered you for years.
How can we bring in you know,hired help to do some of the
things to put me back into wifeposition and give someone else
this caregiving job?
So that's been a more recentand, like really challenging
thing to navigate because itjust means bringing other people
into our home.
But the trade-off is I get tosit more in the wife role than

(01:14:48):
the caregiving role, which isjust important to us.

Speaker 1 (01:14:52):
It's like a priority and it also takes some of the
weight off of you, like you canbe more present, like you said
yeah.
So yeah, that's beautiful.

Speaker 2 (01:15:00):
Yeah.

Speaker 1 (01:15:01):
Well, lori, thank you so much for being in the
podcast.
Is there anything that Ihaven't asked you, that you'd
love to share, or anything youwant to add before we close?

Speaker 2 (01:15:11):
I don't think so.
Thank you so much for having me.
It was so fun to talk and sharea story, albeit hard.

Speaker 1 (01:15:17):
Yeah Well, Lori, thank you so much for so
vulnerably and bravely sharingyour journey with us.
Thank you for having me.
I appreciate it.
Thank you for listening to theOnce we Dare podcast.
It is an honor to share theseencouraging stories with you.
If you enjoy the show, I wouldlove for you to tell your
friends.
Leave us a reviewer rating andsubscribe to wherever you listen

(01:15:40):
to podcasts, because this helpsothers discover the show.
You can find me on my website,speckhopoffcom.
Thank you.