May 9, 2023 • 40 mins
“On a cellular level, Kai’s muscle fibers are misshapen which impacts the way she can contract her muscles, which ultimately leads to severe muscle weakness from head to toe. It takes fifty-two muscle pairs to swallow, so Kai is not able to swallow; the secretions impact her eating and respiratory function.” Kate shares.
Get ready to hear from Kai's parents, Kate and Drew Livingstone, on the latest episode of the Go Shout Love podcast! They'll be sharing their journey with Nemaline Rod Myopathy, so be sure to subscribe to our podcast
Get ready to hear from Kai's parents, Kate and Drew Livingstone, on the latest episode of the Go Shout Love podcast! They'll be sharing their journey with Nemaline Rod Myopathy, so be sure to subscribe to our podcast
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:01):
There's Dre and I who've been marriedfor eleven years this year. Congratulations a
good long time. We still loveeach other, so that's it's a big
win. And we have two children. We have Luke who is seven and
Kai who is three, and wehave our furball, Doug, Doug the
dog, and that's us and Dougis eleven. So was Doug a right
(00:24):
after marriage? Doug was a spontaneousroad trip impulse by Yeah, right after?
When was it? We were drivingback from our open house and I
was asleep and Kate was perusing theclassified ads and so we got him on
the way home. Yep, weliterally stopped at like because if there's anything
(00:49):
a newly married young couple needs tofigure out marriage is Welcome back to the
ghost Shout Love podcast. My nameis Seth Carnell. In today's episode,
surrounds a little Girl named Kai.Kai is a sassy, tenacious, in
musical little girl who will be celebratingher fourth birthday this month. She lives
in Salt Lake City, Utah,with her parents and her big brother,
(01:11):
Luke, and she loves singing,dancing, and playing pranks on people.
We are talking with her parents,Kate and Drew, who will walk us
through her diagnosis of NM, whichis a disorder that primarily affects skeletal muscles,
which are muscles that the body usesfor movement, and can also affect
other organs and body systems as well. There's a lot that goes into this
(01:34):
diagnosis, and Drew and Kate willwalk us through her medical journey from beginning
to now. They are very easyto talk to and even easier to listen
to, and one thing you willlearn right away in this episode is that
they make you feel right at home. One other person that they talk about
is big brother Luke and how hesees his sister for who she really is
and how proud of her he is. This is always one of my favorite
(01:57):
topics to hear about with these families. The siblings of these kids are always
impressive and overwhelmingly loving. In thisconversation is Josh Veach, our executive director
of Goshout Love, along with JessicaSanto, our family relations director and talented
photographer. Please take a second torate, review, and share this podcast.
We would love the feedback and thefamilies would love the shout out along
(02:21):
with their story being heard. Herewe go and we are in Salt Lake
City or near Salt Lake City.Has this been home for you guys the
entire eleven years or where you've beenbefore? Now, we've kind of bounced
around. We met in college andso we got married down in Probo,
Utah, and then I took ajob out of college up in Seattle with
(02:45):
a big four accounting firm, andso we were there for two years,
and then we found our way backto Utah and works here in Salt Lake
City ever since. How would Iwould be I'm curious how you would describe
Kate's relationship with the kids individually,with each kid individually, with each kid,
(03:08):
I would say Kate is an emotionalresource for Luke. She loves him
more than I ever thought possible forsomeone to love someone, and is infinitely
patient with him. And she isas caring and loving and just hard to
(03:32):
find the words to describe her relationshipwith Kay. It's a special, unique,
pure love relationship. It's really sweet, awesome, Kate. How would
you describe Drew's relationship with the kids. Drew is the fun parent. I
would say that I'm the comfort parentand he's the fun parent. Drew has
(03:53):
always held that role in our familydynamic to add levity to any situation and
joy. And I mean he's alwaysthe one that is requested at bedtime for
reading bedtime stories or our recent activityis um like Laser Show and Lightsaber Wars
(04:13):
at night. So there's always theone that's making sure that the fun happens.
So when the kids want to dosomething fun, he's their person for
that, the chief fun officer.Yeah. Um. In prepping for our
visit, Paige talked to you aboutlike some ideas for podcast questions, and
what was interesting is one of thenotes that she gave is don't refer to
(04:35):
her as sweet girl, because wesee girls a lot and they have a
great relationship with the family and they'relike little princess, little sweet, But
that is not how you describe Kai. So she's she's not the sweet She's
you kind of called referred to asthe boss. And when we gad here,
she's sitting at the end of thetable, the head of the table.
And so I wonder if that's kindof if the boss and a queen,
(04:58):
and the queen maybe runs the housea little bit fair. Yeah,
I'd say that Kai is very muchthe stereotypical second child. She looks very
dainty and sweet. Her movements,as you saw, everything she does seems
very delicate, But her personality isshe's a force, and so she's very
(05:20):
feisty and tenacious and has her ownideas and is willing to listen to yours,
but ultimately she's like, no,actually I know best and we're going
to do it my way. Sowe have a lot of big personalities in
this house, so she doesn't necessarilyrun the show, but she fits right
in with everyone's big opinions. Soyou're learning these like leadership qualities of how
(05:44):
to help her learn that it's heridea to do whatever needs to be done.
And then yeah, yeah, shehad to get creative in that as
well. Absolutely absolutely. I feellike that's kind of our job is to
help Hi identify what she wants todo and then we just get to facilitate
it. How do we make ithappen? For How else would you describe
(06:10):
her personality or what she likes todo for fun? What does Kyle love
to do for fun? She's obsessedwith music and singing, and she's When
she was really little, she hadmore sophisticated taste and then the introduction to
all the Disney that we're in theDisney era. So she likes the princesses
(06:30):
that have like power ballads, andshe likes to perform and sing and dance.
What did you have her listening toor what did she want to listen
to before Disney entered her life?Whatever you were listening to, Yeah,
she had her own little playlist andit did have, you know, a
lot of fun songs. But sheis fully immersed in Disney right now.
(06:56):
One thing I would say to answeryour question though, ear there, is
like she's so smart, Like shewants to solve puzzles all day, and
she wants to tinker and touch andshe's just it's very apparent that she's going
to be super bright, and sopart of our job is helping her unleash
that, right, and that's partof the challenge too. Yeah, Yeah,
(07:17):
for sure, she's shown an interestso early in what I would consider
like traditional academic things like numbers andletters, where we're not used to that
because our son has always been morecreative and they wanted to do like crafts
and less, you know, structuredlearning, and she she has Drew's brain
where she just wants to learn,and she is obsessed with books and puzzles
(07:43):
and already wanting to like understand howletters come together to spell things. So
she's very smart, which is intimidatingfor us, and I always neat to
see with her with her alf sorry, with her alphabet puzzle. Well,
she was signing every letter as sheput in, I mean, and typically
happened. So when a child thatcan do puzzles like that and sign each
on her at three years old,that's pretty incredible. Yeah. Yeah,
(08:09):
she keeps us on her toes.How can we challenge her today in a
way that's interesting to her? Tellus a little bit about Kai's medical journey
and where that started and how wegot to where we are today. So
Kai was born May twenty nineteen.I had a typical pregnancy, no markers
(08:31):
of anything. I carried it afull term and it wasn't until I delivered
her that we realized she needed somesupport, specifically respiratory support. And when
she was born, she didn't reallyhave any reflexes. So it was diagnosed
as severe hypotonia, which you knowmeans muscle weakness, And it took us
(08:52):
a while. A couple weeks inthe NIKU before we we got her diagnosis,
which is nmelyn rod myopathy. It'sthe acta one gene mutation that causes
it, and basically what it meansis all of her muscle fibers didn't form
correctly and so she has severe muscleweakness head to toe and so that manifested
(09:18):
for her in she's not able toswallow, and so she needs support in
feeding and support in breathing because inorder to take a breath you use these
muscles. They're called intercostal muscles,but basically your ribcage expands to allow your
lungs to expand, and so shejust needed pretty aggressive intervention and that led
(09:45):
to some of her procedures and eightmonths in the hospital from birth and then
we finally got to bring her homein January of twenty twenty and she's been
at home absolutely kick and butt eversince. How many procedures in those eight
months she had two, So weknew very early on that she would need
(10:07):
the gtube because she was not ableto eat my mouth, so the feeding
tube directly into her stomach. Andin the time period from when they made
that decision, they transferred her toPrimary Children's Hospital and she'd been needing some
respiratory support, but not like fullyintubated respiratory support, so she was kind
(10:28):
of in this unknown How much isshe getting what she needs, we don't
quite know. And in that time, we received her diagnosis and we really
saw a pattern with others with thediagnosis at her severity, and a lot
of them had trakes, and sowe pushed for her to receive a trake
(10:48):
at the same time that she gotthe gtube because it just became apparent to
us that she would need the trakeat some point in her life and we
might as well when she's already goingunder anesthesia, just gets them both at
the same time, put her throughit twice. Yeah. Yeah, So
it was those two at one time, and it was like night and day
difference. She like came alive andyou know, she was never lacking oxygen,
(11:13):
but this really helped her to getthe right pressure so that her body
wasn't just you know, like inmaintenance mode or stay staying alive mode and
allowed her to really develop. Soit was the right decision. I think
we had a lot of families whofear the track if they know that it's
ahead in their future. What wouldyou say to those parents that are in
(11:35):
fear of that, because you guysmade such an early decision. Yeah,
and I know that you and Ichatted about how great it's been for her,
So what would you say to them? I'd say, first of all,
that fear is extremely valid, becauseI don't think that anyone wants to
put unnecessary, you know, whetherit's permanent or not, like ports into
(11:56):
their child. I think it's it'svery into especially the airway. The airway
is such a fragile place to putsomething. So I'd say that fear is
a normal and necessary response. AndI would also say that if it is
(12:16):
going to benefit your child in termsof supporting their breathing, then I feel
like a lot of the fear andas a parent, came from our ability
to care for it, like themedical pressure that was then put on us
and this feeling of inadequacy. Andwe were lucky because Kay, as Drew
(12:37):
said, did show an immediate improvement, and so it kind of was that,
Okay, this was the right choice. She already is more interactive,
she's smiling for the first time,like she can breathe. I think the
best part about a trake is thatif you're not worried about breathing, kids
can think about other things. Ifthey're constantly in this space of struggling to
(12:58):
breathe, they can't develop any otherpart of themselves because they're just breathing.
This thing that's supposed to be aninvoluntary action is taking all of her focus
and all of her energy. Yeahyeah, And how old was she when
she went under that procedure two months? Two months? So she was so
tiny. Yeah yeah. Also,I was very concerned that, you know,
(13:22):
oh that would that would look weirdor whatever. It's totally normal.
And if by chance your child doesn'tneed it in the future, when they
remove it like that, heels uppretty well and it's not something that anyone
would notice. So like that helpedme understand, like, Okay, this
fear is kind of irrational. Thisis going to only improve my child's life.
(13:46):
Yeah. Yeah. You. Noone can have a child in the
nikkiu for an extended period of time, especially eight months, and not be
impacted as an individual. I'm surenot be impacted. If I'm doing the
math right. You guys are marriedsaid or eight years at that time.
It's going to have an impact onyour marriage. Can you talk about what
(14:09):
those eight months were like and hownot just not necessarily her medical things that
she faced, but the surrounding factorsthat were impacted by just eight months in
the hospital. Yeah, it tooka heavy toll on our family. I
think we were able to get throughit just by relying on each other.
(14:31):
But we certainly felt disconnected at timesbecause I was still working full time,
but Kate was having to drive,you know, forty five minutes to see
Kai each way, and I wasdoing the same after work, and so
we just had like no time andit was it was hard, but we
(14:54):
feel lucky that we were able tocome out the other side of it right,
and we feel infinitely more prepared tohandle things at home because we spent
a lot of time at the hospital. And yeah, it was hard on
our relationship and our relationship with ourson, but we've been able to make
up for that, you know,in the three years since then by just
having this light in our home.Yeah, yeah, well said, I
(15:18):
think it pushed us to lean onour support systems. I think, you
know, we've really been passionate aboutbeing very independent and making sure that we
weren't dependent on anyone else, likefinancially or and this just kind of gave
us an opportunity to really lean onthe people that wanted to show up for
(15:39):
us. A lot of the supportcame in in helping us with Luke because
he didn't understand what was happening,and his patience for being in the hospital
was pretty minimal, and and sothat was a big learning curve for us,
just balancing every all the dynamics thatwe had to and it was hard.
(16:03):
I'm not gonna lie. It wasn't. I can't sugarcoat it. It
was very hard, and it did. I feel like there were times where
we were coexisting, you know,where it was literally like we were just
handing Luke off to each other orand we didn't really always have the emotional
capacity to show up for each other. But we tried. We tried,
(16:26):
And I think there are just phasesin life, regardless of your circumstance,
where you just kind of like you'rejust white knuckling and you're just getting through.
And it doesn't only happen when youhave a medically complex child, it
can happen in any phase of life. Yeah, Drew, you said that
you guys made it through and madeit through well all things considered. If
you had to go back, ifthere was something you wish you could have
(16:49):
tweaked, something that's in your control. Maybe is there anything like if there's
somebody that's starting a journey now andthey have seven months ahead of them,
is there any advice that you wouldgive to a dad on here's how you
can do your best to be presentand also fill the rules that you're you
know that you fill in your family. Yeah, I think something that Kate
(17:11):
kind of touched on. You know, it's prominent in my mind that you
have a support system, right like, lean on your support system. If
it's your neighbor, if it's yourparents, if it's a cousin, you
know whoever, Like, people arethere, and people are good, they
want to help each other out,Like you guys are a great example of
(17:33):
that. Right. People want tohelp and they want to be invested in
a good cause. And what's abetter cause than you know, a sweet
child that needs help and needs asupport system to be built out, So
lean on them. And if youdon't have that, like you know,
reach out to a counselor or anadvisor or something like that, like that
(17:55):
there's plenty of resources and just learnto use your resources. Yeah, it's
good, Okay, anything you wouldadd from a mom's perspective, I would
also say, we've been pretty proactivein pursuing therapy. I think we knew
that when Kai came home that wewere going to need to do some healing
(18:19):
to overcome that, and so wepursued that pretty early on, and I
think it really helped us to transitionfrom this phase of like survival and high
alert to our what we call ournew normal. You know, it happened
at the exact same time that thepandemic started, and so we were taking
(18:40):
all of our medical trauma into aglobal pandemic and it was a lot.
But I think having like a therapistthat we were consistently able to communicate with
was very beneficial for just sorting throughall of the feelings. Because we rely
on each other, but we justcan't expect you can't expect yourself else who's
also in it to be able tocarry you, you have to have.
(19:03):
That's I think the outside support youhave to make sure that you're not only
putting it on each other. Yeah, is that something that friends or family
advised you guys to do, orsomething you kind of pursued on your own
to do the counseling. I'd saywe pursue on our own just because of
(19:25):
different experiences with loved ones who havegone through really complicated things and seeing the
benefits for them. So I thinkI already, like you know, I
already believed in the power of therapybefore. So that made it a little
bit easy, I ask, justbecause it shows so much maturity to immediately
coming out of that recognize we needthis and to do it quickly instead of
(19:48):
trying to, like you said,white knucklet and then transition into something that's
normal and then have all these otherissues compile. Yeah, and then you
get to a point where it's evenmore difficult to start to break through or
work through those things. So yeah, just that seems like a lot of
maturity to make that decision in thatmoment. So thank you. I think
that people always assume that, oh, someone needs therapy because like they're on
(20:11):
the verge of divorce or they're thething, But it's really to me,
it was maintenance. It's like,how do we we wanted to get out
of surviving, out of surviving andinto thriving, and to me, healing
from what we experienced was the mostimportant part of making that happen. Yeah,
you need the therapy because you're human. Yeah, yeah, Yeah,
(20:33):
it's very admirable. Quality of lifeis a phrase that is has different perceptions
and is especially in families that wetalked to and the rare with kids in
the rare medical space. How doyou, guys define quality of life and
especially what that means for Kai andthen what adjustments do you make to to
(20:57):
give her the best life possible.I think quality of life for Kai is
Kai being able to do what Kaiwants to do. I mean, she's
three, She wants to explore,she wants to she just wants to independently
navigate her world. And so tome, quality of life is her being
(21:18):
able to do that in whatever andin our house it means a lot of
equipment to help her facilitate that kindof stuff because her cognition is not impacted,
so it's very physical. So there'sjust a lot of wheelchairs and standards
and adaptations that we make to facilitateher independence because that's her personality. She
(21:41):
wants to do new things, shewants to experience new things. How does
she let you know when she wantsto do something new or different. It's
a lot of pointing, yelling,a lot of interpretation. Yeah, so
I'm yelling she's great about helping usthat she's unsatisfied. She's yeah, she's
(22:04):
awesome. That's a lot of thesassy behavior. You know, yes,
no, she's yes and no.We're definitely her first, very clear words,
and that's a lot of the waythat we've incorporated sign is. You
know, she knows her color,she knows her letters. So if she's
like pointing to something, she'll tellus like, I want the yellow thing,
(22:25):
and she'll sign yellow, and thenwe're like, okay, she wants
you want the yellow book. She'ssigning book and yellow, and we're like
looking on the bookshelf and kind ofworking together to navigate the communication components.
I'm not sure at times she canget frustrated too. Oh, I mean
you mentioned earlier that she wants totalk so badly, and sometimes that could
(22:45):
probably be a struggle for her.How does she show her frustration with that
tears? Yeah, she does thisfist shaking mad sign I'm mad and also
sad, like she'll sign that she'ssad. She's very good articulating what emotion
she's feeling. That something we workedon pretty early. But yeah, a
lot of tears, you know,and we promote crying in this house.
(23:10):
I think, I think it's avery healthy outlet for people to just get
those feelings out. You got tofeel them. So what's your hope for
her for the future, for school, for friendships, for anything in her
path? I mean, she's alreadygoing to preschool and it's a really cool
preschool in the area where there aresome kids with disabilities and there are normal
(23:32):
kids, and there's a lot ofemphasis on integration and they do a really
awesome job of helping the kids interact. And so she goes and she's like
the life of the party. Allthe kids want to help her and play
with her. And so just youknow, like you guys have been said
saying, a normal lifestyle, right, like quality of life in our eyes
(23:55):
is just a typical life. That'swhat we want to provide her. Yeah,
just for her to be in aspace where she fundamentally belongs. I
mean, I think a lot ofa lot of it is accessibility, but
it's also just people that see herfor who she is. The people that
are aware and acknowledge the equipment,but they just see the person and where
(24:21):
she's not only included, but thatnext level of like you belong here,
we want you here. We madethese accommodations because we value your presence,
and her preschool is exceptional at doingthat. She fundamentally belongs and her friends
are obsessed with her and it's veryspecial. Go ahead, you're friend.
(24:48):
Yeah, thank you that I can'thave that. I know. I was
just going to just talk about himtoo. So yeah, he's so those
freckles on his nose. He crinklesthat nose and those freckles pop out.
He's he's a heart throb. WheneverI make im up from school, all
(25:10):
the girls are like, bye Luke, Bye Luke, Bye Luke. You
are in trouble, I know.And well, speaking of someone who UM
includes your little boy, Luke isa very proud big brother and um lights
up whenever she's around. What hashe taught you about your journey with Kai
(25:30):
m That's a good question. Hefiercely defends her and fiercely includes her.
He always wants people to know,hey, this is my sister. She
has tubes. That was that waslike his standard emma. Whenever we would
be on a walk and he'd seeliving anyone recognize, Hey, my name
(25:52):
is Luke. This is my sisterKay. She has tubes, and it's
like, let's just burnt. Sohe has been ultra inclusive and it's exciting
to see that. Like right now, he's, you know, trying to
decide what he wants to be whenhe grows up, and he's landed on
(26:12):
a scientist lately, and it's like, we feel like he really wants to
help her, like he sees thatas like one of his missions in life
or one of his goals in lifeis to make her life better and improved.
And it's it's exciting to see someonewho's so passionate about their sibling like
that, right, And what adifference he'll be able to make to help
(26:34):
other kids and adults understand his sisterand her complexities. He has such an
innocent but powerful way of stating justobvious things that we might be too scared
to ask, like can I justtell you about it? Yeah. The
way that he explains her equipment tohis friends is my favorite because it's so
(26:56):
simple and he is always explaining like, oh, this is her trait,
and this is her ventilator, andthat's her suction that she and she needs
it. It's just so cool becauseit's so matter of fact, and to
me, I think that's the waythat we should all approach disabilities. This
is just a normal part of thehuman existence, and I think kids are
(27:17):
great examples of how to approach itso honestly and authentically. His little book,
so he created a book of atrip that we went on this last
year, and like every picture islike him, including Kay and he's helping
her to scuba dive. In someof the pictures it's like, yeah,
in the future, there'll be asuit or there'll be ventilated so that she
(27:40):
can scuba dive. It's like,well maybe, yeah, exactly, you're
going to be the engineer. Butwhat's cool about that is he's already thinking
in her future. Yea, whatcan be for her that isn't now,
but that like a world where she'seven more there's even a greater sense of
her belonging than it is now,which is profound for a seven year old.
(28:03):
That's awesome, amazing. I hopeyou saved that forever. So when
he does. Yes, we canshow him the first draft of the first
Yeah. He was really into StarWars and got fixated on the concept that
Darth Vader uses a ventilator and it'sbuilt into his suit, and so he's
he's like, we just have tomake Kaya mex suit where there's a ventilator
(28:25):
built in and then she can walkaround like a giant robot with a ventilator
built in. He's like, He'slike they already did in Star Wars,
Like, why aren't we making it. We're sending civilians in the space.
Let's get it together. Yeah,Kai's robot suit. Let's let's Yeah.
So it would shock me if hedidn't do something that facilitates some type of
(28:45):
adaptive equipment in the future. Yeah. Um, what has your experience with
um the medical field overall been,Like, we hear horror stories and we
hear um you know, places thatare really special because of the impact that's
been made by a doctor or anurse. And I'm just curious if there's
(29:07):
any moments in your journey so farwith Guy's medical history where this part of
our story stands out good or badbecause of this thing. I'd say that
we definitely haven't had any horror stories. We've had overall a very positive experience.
But it's very humbling to have adiagnosis that's so rare that you hear
(29:33):
the phrase from your doctors, oh, we've never heard of this before.
It doesn't instill a lot of confidencewhen that's the first thing, or when
you're meeting a new specialist and theywant you to edge you as the parent
to educate about the diagnosis. Now, we're used to it, but when
she was tiny, I remember havingthis feeling of wait, aren't you supposed
to tell me what you know?The plan is here? And and so
(29:57):
that was definitely a paradigm shift forme to understand that it was our responsibility
to be as educated as possible aboutthe diagnosis specific care so that we could
advocate for her and make sure thather doctors knew what was the most relevant
and appropriate things to support her.So that was a big eye opening experience
(30:21):
for me. I will say thather neurologist here is amazing. He is
very knowledgeable about her diagnosis and proactiveabout learning about new treatment plans or ways
that he can support. So wereally really have had a good experience with
him. And our nurses, ournurses in every she was in three different
(30:45):
facilities, you know, from oneNIKU to another NIKU to a long term
acute care facility. And then ourhome health nurses are the we call him
Team Kai. They are everything tous because I think the nurses in any
type of medical environment are the onesthat really get it. They're the ones
(31:07):
that are doing the patient care.And am they doing it quietly? Yes?
They need recognition more. I feelthey do such an important job.
Yes, let's not step past though, the fact that you are an incredible
advocate and you fight with insurance anddurable medical device providers, and you have
a full time job on your handnavigating the sometimes tricky world of insurance and
(31:37):
advocating providing for our daughter adequately.So thank you. It's hard work and
to really help your kiddo, youknow, have the best life. That
is an uphill battle that needs tobe fought. Yeah, that's true.
That's true. That that was somethingthat people talked about, but I didn't
(31:59):
really understand until we came home.Is I joke that I'm high secretary.
That's my full time job. Youknow, I'm her caregiver secondary to being
her secretary because the amount of timethat is spent just making sure that the
right supplies come on time and youknow, the therapies get approved or you
know anything, where did that missingpackage end up? Um? It is
(32:20):
a full time job. Um,legitimately a full time job. Yeah.
Yeah, which because we have thenursing support that we have, I'm able
to do that. Um. Andyeah, we have a good team.
I don't think we've ever talked toa family that doesn't have at least a
handful of insurance battle stories. Um, so you net you said, you
(32:45):
said it the nicest way I thinkanyone's dealing with insurance, because Kate's the
one that handles all that was inthe trenches. I'd have a lot more
a stronger, a stronger word toput towards that. Yeah, I'm curious,
(33:07):
Kate, how would you describe Drewnow as opposed to the man that
you married? Ooh, that's hardfor me to do without crying. I
think the word I would use isevolution. I feel like when Drew and
(33:28):
I got married, we were youngand naive, and you know, and
when we got married, I rememberI can't remember if as my mom or
someone said that Drew is the epitomeof raw potential, you know, just
like he has a heart of gold. And I think that it's the hard
stuff in life that refines us.And I'm very very grateful for the man
(33:58):
and father that this phase has refinedDrew into, because I'm definitely getting the
best version of him that I've everhad now, and our kids are very
lucky to have not only a fundad, but someone who genuinely is so
loving and kind and tender with them. So it's been a very beautiful thing
(34:22):
to watch and definitely a silver liningthrough the harder stuff, Drew, did
she tell you that quote of rawpotential back then? No, she did
not tell me that. But I'mglad to hear that someone's not the potential.
(34:42):
But you don't get off the hook. What's the same question for you?
How is Kate different than the womanyou married? Well, when I
married Kate, when we first starteddating, I thought she was perfect then,
but I had no idea that shecould be who she is now.
She is incredible. She has madeevery single change or sacrifice that our family
(35:10):
has has needed. And I seesomeone that has the biggest heart that I've
ever recognizing someone you love everyone unconditionally, and I had no idea your power
to influence people around these lives.I don't know anyone that doesn't like you.
(35:34):
I'm sure you know plenty of peoplethat doesn't like me. I don't
know anyone that doesn't love or gushover you, And so that speaks to
how incredible of a woman you are, how much of a resource to people
you are emotionally, and we're allbetter for it. Thank you, Geez.
I don't know about you, butI want to go hug my husband.
(36:00):
You can tell that you guys haveworked hard to keep this the way
it is right now, and youguys are don't an amazing job. It's
also a part time therapist for me, so I have too therapists. She's
amazing at that. That's great.I don't have any questions. There's any
(36:23):
part of your story that we didn'ttouch on that you feel strongly you'd like
to talk about. This is yourchance. What would you tell mom,
who's her first name in the nickand she has no idea what's about to
be in her future? What wouldyou tell her? I would say that
(36:47):
everything you're afraid of and everything thatyou're searching for you have within you like
there's no one else that can dothis job better than you, and you
you just have to dig deep andlean in, lean into the discomfort,
lean into the heart, and allowit to mold you, because you are
(37:15):
the only person that can be thebest parent to this child. And it's
the most overwhelming phase. I'd saythat the beginning was the most raw phase
for us. That's the only wordI can think of, because you just
feel like you've been stripped bare,and every insecurity, every trigger point in
(37:37):
your marriage, everything is so raw, and I think you only can pass
through it by leaning in and justdoing it one minute at a time,
one day at a time. AndI remember thinking, there's absolutely no way
(38:00):
that I am capable of learning thismedical stuff, and now it's my full
time language, and I have toremind myself that not everyone speaks the medical
language, and how you are justcapable of everything that you don't believe you
are, and you just keep goingand find if you don't have an answer,
(38:23):
find someone who does. Find yourexperts. We have found the most
comfort and support from other families andindividuals with the same or similar diagnosis to
Kai. They have been the oneswho have been our guides, and when
you have either no diagnosis or arare diagnosis and there's not a clear path,
(38:50):
social media is a great way tofind people that are doing what you're
doing and can give you hope.It was like looking at other families social
media and seeing all the things thattheir kids were doing that gave us hope
the day that we received the diagnosisand every day since and now all we
(39:14):
want to do is make sure thatother people see the joy that this life
has, that this is the goodstuff. You know, you have to
kind of learn and grow and getthrough some of the hard stuff, but
it's such a full and better lifethan we could have imagined or created for
(39:35):
ourselves. At Go Shout Love,we do amazing things for amazing families with
kids on rare medical journeys. Eachmonth we shout love for families through the
sale of creative apparel inspired by thekids. This month's make Waves design is
inspired by Kai, a sassy andtenacious girl who turns four years old this
(39:55):
month. Kai models perfectly for uswhat it looks like to live a bold
and unapologetic life and be yourself.Every purchase in May will be used to
purchase a special needs flotation device sothat Kai can participate in aquatherapy as well
as swimming with her brother and family. Visit our website at goshout dot love
(40:15):
to support Kai through the purchase ofa T shirt, hat, tank top,
hoodie, or other items
There's Dre and I who've been marriedfor eleven years this year. Congratulations a
good long time. We still loveeach other, so that's it's a big
win. And we have two children. We have Luke who is seven and
Kai who is three, and wehave our furball, Doug, Doug the
dog, and that's us and Dougis eleven. So was Doug a right
(00:24):
after marriage? Doug was a spontaneousroad trip impulse by Yeah, right after?
When was it? We were drivingback from our open house and I
was asleep and Kate was perusing theclassified ads and so we got him on
the way home. Yep, weliterally stopped at like because if there's anything
(00:49):
a newly married young couple needs tofigure out marriage is Welcome back to the
ghost Shout Love podcast. My nameis Seth Carnell. In today's episode,
surrounds a little Girl named Kai.Kai is a sassy, tenacious, in
musical little girl who will be celebratingher fourth birthday this month. She lives
in Salt Lake City, Utah,with her parents and her big brother,
(01:11):
Luke, and she loves singing,dancing, and playing pranks on people.
We are talking with her parents,Kate and Drew, who will walk us
through her diagnosis of NM, whichis a disorder that primarily affects skeletal muscles,
which are muscles that the body usesfor movement, and can also affect
other organs and body systems as well. There's a lot that goes into this
(01:34):
diagnosis, and Drew and Kate willwalk us through her medical journey from beginning
to now. They are very easyto talk to and even easier to listen
to, and one thing you willlearn right away in this episode is that
they make you feel right at home. One other person that they talk about
is big brother Luke and how hesees his sister for who she really is
and how proud of her he is. This is always one of my favorite
(01:57):
topics to hear about with these families. The siblings of these kids are always
impressive and overwhelmingly loving. In thisconversation is Josh Veach, our executive director
of Goshout Love, along with JessicaSanto, our family relations director and talented
photographer. Please take a second torate, review, and share this podcast.
We would love the feedback and thefamilies would love the shout out along
(02:21):
with their story being heard. Herewe go and we are in Salt Lake
City or near Salt Lake City.Has this been home for you guys the
entire eleven years or where you've beenbefore? Now, we've kind of bounced
around. We met in college andso we got married down in Probo,
Utah, and then I took ajob out of college up in Seattle with
(02:45):
a big four accounting firm, andso we were there for two years,
and then we found our way backto Utah and works here in Salt Lake
City ever since. How would Iwould be I'm curious how you would describe
Kate's relationship with the kids individually,with each kid individually, with each kid,
(03:08):
I would say Kate is an emotionalresource for Luke. She loves him
more than I ever thought possible forsomeone to love someone, and is infinitely
patient with him. And she isas caring and loving and just hard to
(03:32):
find the words to describe her relationshipwith Kay. It's a special, unique,
pure love relationship. It's really sweet, awesome, Kate. How would
you describe Drew's relationship with the kids. Drew is the fun parent. I
would say that I'm the comfort parentand he's the fun parent. Drew has
(03:53):
always held that role in our familydynamic to add levity to any situation and
joy. And I mean he's alwaysthe one that is requested at bedtime for
reading bedtime stories or our recent activityis um like Laser Show and Lightsaber Wars
(04:13):
at night. So there's always theone that's making sure that the fun happens.
So when the kids want to dosomething fun, he's their person for
that, the chief fun officer.Yeah. Um. In prepping for our
visit, Paige talked to you aboutlike some ideas for podcast questions, and
what was interesting is one of thenotes that she gave is don't refer to
(04:35):
her as sweet girl, because wesee girls a lot and they have a
great relationship with the family and they'relike little princess, little sweet, But
that is not how you describe Kai. So she's she's not the sweet She's
you kind of called referred to asthe boss. And when we gad here,
she's sitting at the end of thetable, the head of the table.
And so I wonder if that's kindof if the boss and a queen,
(04:58):
and the queen maybe runs the housea little bit fair. Yeah,
I'd say that Kai is very muchthe stereotypical second child. She looks very
dainty and sweet. Her movements,as you saw, everything she does seems
very delicate, But her personality isshe's a force, and so she's very
(05:20):
feisty and tenacious and has her ownideas and is willing to listen to yours,
but ultimately she's like, no,actually I know best and we're going
to do it my way. Sowe have a lot of big personalities in
this house, so she doesn't necessarilyrun the show, but she fits right
in with everyone's big opinions. Soyou're learning these like leadership qualities of how
(05:44):
to help her learn that it's heridea to do whatever needs to be done.
And then yeah, yeah, shehad to get creative in that as
well. Absolutely absolutely. I feellike that's kind of our job is to
help Hi identify what she wants todo and then we just get to facilitate
it. How do we make ithappen? For How else would you describe
(06:10):
her personality or what she likes todo for fun? What does Kyle love
to do for fun? She's obsessedwith music and singing, and she's When
she was really little, she hadmore sophisticated taste and then the introduction to
all the Disney that we're in theDisney era. So she likes the princesses
(06:30):
that have like power ballads, andshe likes to perform and sing and dance.
What did you have her listening toor what did she want to listen
to before Disney entered her life?Whatever you were listening to, Yeah,
she had her own little playlist andit did have, you know, a
lot of fun songs. But sheis fully immersed in Disney right now.
(06:56):
One thing I would say to answeryour question though, ear there, is
like she's so smart, Like shewants to solve puzzles all day, and
she wants to tinker and touch andshe's just it's very apparent that she's going
to be super bright, and sopart of our job is helping her unleash
that, right, and that's partof the challenge too. Yeah, Yeah,
(07:17):
for sure, she's shown an interestso early in what I would consider
like traditional academic things like numbers andletters, where we're not used to that
because our son has always been morecreative and they wanted to do like crafts
and less, you know, structuredlearning, and she she has Drew's brain
where she just wants to learn,and she is obsessed with books and puzzles
(07:43):
and already wanting to like understand howletters come together to spell things. So
she's very smart, which is intimidatingfor us, and I always neat to
see with her with her alf sorry, with her alphabet puzzle. Well,
she was signing every letter as sheput in, I mean, and typically
happened. So when a child thatcan do puzzles like that and sign each
on her at three years old,that's pretty incredible. Yeah. Yeah,
(08:09):
she keeps us on her toes.How can we challenge her today in a
way that's interesting to her? Tellus a little bit about Kai's medical journey
and where that started and how wegot to where we are today. So
Kai was born May twenty nineteen.I had a typical pregnancy, no markers
(08:31):
of anything. I carried it afull term and it wasn't until I delivered
her that we realized she needed somesupport, specifically respiratory support. And when
she was born, she didn't reallyhave any reflexes. So it was diagnosed
as severe hypotonia, which you knowmeans muscle weakness, And it took us
(08:52):
a while. A couple weeks inthe NIKU before we we got her diagnosis,
which is nmelyn rod myopathy. It'sthe acta one gene mutation that causes
it, and basically what it meansis all of her muscle fibers didn't form
correctly and so she has severe muscleweakness head to toe and so that manifested
(09:18):
for her in she's not able toswallow, and so she needs support in
feeding and support in breathing because inorder to take a breath you use these
muscles. They're called intercostal muscles,but basically your ribcage expands to allow your
lungs to expand, and so shejust needed pretty aggressive intervention and that led
(09:45):
to some of her procedures and eightmonths in the hospital from birth and then
we finally got to bring her homein January of twenty twenty and she's been
at home absolutely kick and butt eversince. How many procedures in those eight
months she had two, So weknew very early on that she would need
(10:07):
the gtube because she was not ableto eat my mouth, so the feeding
tube directly into her stomach. Andin the time period from when they made
that decision, they transferred her toPrimary Children's Hospital and she'd been needing some
respiratory support, but not like fullyintubated respiratory support, so she was kind
(10:28):
of in this unknown How much isshe getting what she needs, we don't
quite know. And in that time, we received her diagnosis and we really
saw a pattern with others with thediagnosis at her severity, and a lot
of them had trakes, and sowe pushed for her to receive a trake
(10:48):
at the same time that she gotthe gtube because it just became apparent to
us that she would need the trakeat some point in her life and we
might as well when she's already goingunder anesthesia, just gets them both at
the same time, put her throughit twice. Yeah. Yeah, So
it was those two at one time, and it was like night and day
difference. She like came alive andyou know, she was never lacking oxygen,
(11:13):
but this really helped her to getthe right pressure so that her body
wasn't just you know, like inmaintenance mode or stay staying alive mode and
allowed her to really develop. Soit was the right decision. I think
we had a lot of families whofear the track if they know that it's
ahead in their future. What wouldyou say to those parents that are in
(11:35):
fear of that, because you guysmade such an early decision. Yeah,
and I know that you and Ichatted about how great it's been for her,
So what would you say to them? I'd say, first of all,
that fear is extremely valid, becauseI don't think that anyone wants to
put unnecessary, you know, whetherit's permanent or not, like ports into
(11:56):
their child. I think it's it'svery into especially the airway. The airway
is such a fragile place to putsomething. So I'd say that fear is
a normal and necessary response. AndI would also say that if it is
(12:16):
going to benefit your child in termsof supporting their breathing, then I feel
like a lot of the fear andas a parent, came from our ability
to care for it, like themedical pressure that was then put on us
and this feeling of inadequacy. Andwe were lucky because Kay, as Drew
(12:37):
said, did show an immediate improvement, and so it kind of was that,
Okay, this was the right choice. She already is more interactive,
she's smiling for the first time,like she can breathe. I think the
best part about a trake is thatif you're not worried about breathing, kids
can think about other things. Ifthey're constantly in this space of struggling to
(12:58):
breathe, they can't develop any otherpart of themselves because they're just breathing.
This thing that's supposed to be aninvoluntary action is taking all of her focus
and all of her energy. Yeahyeah, And how old was she when
she went under that procedure two months? Two months? So she was so
tiny. Yeah yeah. Also,I was very concerned that, you know,
(13:22):
oh that would that would look weirdor whatever. It's totally normal.
And if by chance your child doesn'tneed it in the future, when they
remove it like that, heels uppretty well and it's not something that anyone
would notice. So like that helpedme understand, like, Okay, this
fear is kind of irrational. Thisis going to only improve my child's life.
(13:46):
Yeah. Yeah. You. Noone can have a child in the
nikkiu for an extended period of time, especially eight months, and not be
impacted as an individual. I'm surenot be impacted. If I'm doing the
math right. You guys are marriedsaid or eight years at that time.
It's going to have an impact onyour marriage. Can you talk about what
(14:09):
those eight months were like and hownot just not necessarily her medical things that
she faced, but the surrounding factorsthat were impacted by just eight months in
the hospital. Yeah, it tooka heavy toll on our family. I
think we were able to get throughit just by relying on each other.
(14:31):
But we certainly felt disconnected at timesbecause I was still working full time,
but Kate was having to drive,you know, forty five minutes to see
Kai each way, and I wasdoing the same after work, and so
we just had like no time andit was it was hard, but we
(14:54):
feel lucky that we were able tocome out the other side of it right,
and we feel infinitely more prepared tohandle things at home because we spent
a lot of time at the hospital. And yeah, it was hard on
our relationship and our relationship with ourson, but we've been able to make
up for that, you know,in the three years since then by just
having this light in our home.Yeah, yeah, well said, I
(15:18):
think it pushed us to lean onour support systems. I think, you
know, we've really been passionate aboutbeing very independent and making sure that we
weren't dependent on anyone else, likefinancially or and this just kind of gave
us an opportunity to really lean onthe people that wanted to show up for
(15:39):
us. A lot of the supportcame in in helping us with Luke because
he didn't understand what was happening,and his patience for being in the hospital
was pretty minimal, and and sothat was a big learning curve for us,
just balancing every all the dynamics thatwe had to and it was hard.
(16:03):
I'm not gonna lie. It wasn't. I can't sugarcoat it. It
was very hard, and it did. I feel like there were times where
we were coexisting, you know,where it was literally like we were just
handing Luke off to each other orand we didn't really always have the emotional
capacity to show up for each other. But we tried. We tried,
(16:26):
And I think there are just phasesin life, regardless of your circumstance,
where you just kind of like you'rejust white knuckling and you're just getting through.
And it doesn't only happen when youhave a medically complex child, it
can happen in any phase of life. Yeah, Drew, you said that
you guys made it through and madeit through well all things considered. If
you had to go back, ifthere was something you wish you could have
(16:49):
tweaked, something that's in your control. Maybe is there anything like if there's
somebody that's starting a journey now andthey have seven months ahead of them,
is there any advice that you wouldgive to a dad on here's how you
can do your best to be presentand also fill the rules that you're you
know that you fill in your family. Yeah, I think something that Kate
(17:11):
kind of touched on. You know, it's prominent in my mind that you
have a support system, right like, lean on your support system. If
it's your neighbor, if it's yourparents, if it's a cousin, you
know whoever, Like, people arethere, and people are good, they
want to help each other out,Like you guys are a great example of
(17:33):
that. Right. People want tohelp and they want to be invested in
a good cause. And what's abetter cause than you know, a sweet
child that needs help and needs asupport system to be built out, So
lean on them. And if youdon't have that, like you know,
reach out to a counselor or anadvisor or something like that, like that
(17:55):
there's plenty of resources and just learnto use your resources. Yeah, it's
good, Okay, anything you wouldadd from a mom's perspective, I would
also say, we've been pretty proactivein pursuing therapy. I think we knew
that when Kai came home that wewere going to need to do some healing
(18:19):
to overcome that, and so wepursued that pretty early on, and I
think it really helped us to transitionfrom this phase of like survival and high
alert to our what we call ournew normal. You know, it happened
at the exact same time that thepandemic started, and so we were taking
(18:40):
all of our medical trauma into aglobal pandemic and it was a lot.
But I think having like a therapistthat we were consistently able to communicate with
was very beneficial for just sorting throughall of the feelings. Because we rely
on each other, but we justcan't expect you can't expect yourself else who's
also in it to be able tocarry you, you have to have.
(19:03):
That's I think the outside support youhave to make sure that you're not only
putting it on each other. Yeah, is that something that friends or family
advised you guys to do, orsomething you kind of pursued on your own
to do the counseling. I'd saywe pursue on our own just because of
(19:25):
different experiences with loved ones who havegone through really complicated things and seeing the
benefits for them. So I thinkI already, like you know, I
already believed in the power of therapybefore. So that made it a little
bit easy, I ask, justbecause it shows so much maturity to immediately
coming out of that recognize we needthis and to do it quickly instead of
(19:48):
trying to, like you said,white knucklet and then transition into something that's
normal and then have all these otherissues compile. Yeah, and then you
get to a point where it's evenmore difficult to start to break through or
work through those things. So yeah, just that seems like a lot of
maturity to make that decision in thatmoment. So thank you. I think
that people always assume that, oh, someone needs therapy because like they're on
(20:11):
the verge of divorce or they're thething, But it's really to me,
it was maintenance. It's like,how do we we wanted to get out
of surviving, out of surviving andinto thriving, and to me, healing
from what we experienced was the mostimportant part of making that happen. Yeah,
you need the therapy because you're human. Yeah, yeah, Yeah,
(20:33):
it's very admirable. Quality of lifeis a phrase that is has different perceptions
and is especially in families that wetalked to and the rare with kids in
the rare medical space. How doyou, guys define quality of life and
especially what that means for Kai andthen what adjustments do you make to to
(20:57):
give her the best life possible.I think quality of life for Kai is
Kai being able to do what Kaiwants to do. I mean, she's
three, She wants to explore,she wants to she just wants to independently
navigate her world. And so tome, quality of life is her being
(21:18):
able to do that in whatever andin our house it means a lot of
equipment to help her facilitate that kindof stuff because her cognition is not impacted,
so it's very physical. So there'sjust a lot of wheelchairs and standards
and adaptations that we make to facilitateher independence because that's her personality. She
(21:41):
wants to do new things, shewants to experience new things. How does
she let you know when she wantsto do something new or different. It's
a lot of pointing, yelling,a lot of interpretation. Yeah, so
I'm yelling she's great about helping usthat she's unsatisfied. She's yeah, she's
(22:04):
awesome. That's a lot of thesassy behavior. You know, yes,
no, she's yes and no.We're definitely her first, very clear words,
and that's a lot of the waythat we've incorporated sign is. You
know, she knows her color,she knows her letters. So if she's
like pointing to something, she'll tellus like, I want the yellow thing,
(22:25):
and she'll sign yellow, and thenwe're like, okay, she wants
you want the yellow book. She'ssigning book and yellow, and we're like
looking on the bookshelf and kind ofworking together to navigate the communication components.
I'm not sure at times she canget frustrated too. Oh, I mean
you mentioned earlier that she wants totalk so badly, and sometimes that could
(22:45):
probably be a struggle for her.How does she show her frustration with that
tears? Yeah, she does thisfist shaking mad sign I'm mad and also
sad, like she'll sign that she'ssad. She's very good articulating what emotion
she's feeling. That something we workedon pretty early. But yeah, a
lot of tears, you know,and we promote crying in this house.
(23:10):
I think, I think it's avery healthy outlet for people to just get
those feelings out. You got tofeel them. So what's your hope for
her for the future, for school, for friendships, for anything in her
path? I mean, she's alreadygoing to preschool and it's a really cool
preschool in the area where there aresome kids with disabilities and there are normal
(23:32):
kids, and there's a lot ofemphasis on integration and they do a really
awesome job of helping the kids interact. And so she goes and she's like
the life of the party. Allthe kids want to help her and play
with her. And so just youknow, like you guys have been said
saying, a normal lifestyle, right, like quality of life in our eyes
(23:55):
is just a typical life. That'swhat we want to provide her. Yeah,
just for her to be in aspace where she fundamentally belongs. I
mean, I think a lot ofa lot of it is accessibility, but
it's also just people that see herfor who she is. The people that
are aware and acknowledge the equipment,but they just see the person and where
(24:21):
she's not only included, but thatnext level of like you belong here,
we want you here. We madethese accommodations because we value your presence,
and her preschool is exceptional at doingthat. She fundamentally belongs and her friends
are obsessed with her and it's veryspecial. Go ahead, you're friend.
(24:48):
Yeah, thank you that I can'thave that. I know. I was
just going to just talk about himtoo. So yeah, he's so those
freckles on his nose. He crinklesthat nose and those freckles pop out.
He's he's a heart throb. WheneverI make im up from school, all
(25:10):
the girls are like, bye Luke, Bye Luke, Bye Luke. You
are in trouble, I know.And well, speaking of someone who UM
includes your little boy, Luke isa very proud big brother and um lights
up whenever she's around. What hashe taught you about your journey with Kai
(25:30):
m That's a good question. Hefiercely defends her and fiercely includes her.
He always wants people to know,hey, this is my sister. She
has tubes. That was that waslike his standard emma. Whenever we would
be on a walk and he'd seeliving anyone recognize, Hey, my name
(25:52):
is Luke. This is my sisterKay. She has tubes, and it's
like, let's just burnt. Sohe has been ultra inclusive and it's exciting
to see that. Like right now, he's, you know, trying to
decide what he wants to be whenhe grows up, and he's landed on
(26:12):
a scientist lately, and it's like, we feel like he really wants to
help her, like he sees thatas like one of his missions in life
or one of his goals in lifeis to make her life better and improved.
And it's it's exciting to see someonewho's so passionate about their sibling like
that, right, And what adifference he'll be able to make to help
(26:34):
other kids and adults understand his sisterand her complexities. He has such an
innocent but powerful way of stating justobvious things that we might be too scared
to ask, like can I justtell you about it? Yeah. The
way that he explains her equipment tohis friends is my favorite because it's so
(26:56):
simple and he is always explaining like, oh, this is her trait,
and this is her ventilator, andthat's her suction that she and she needs
it. It's just so cool becauseit's so matter of fact, and to
me, I think that's the waythat we should all approach disabilities. This
is just a normal part of thehuman existence, and I think kids are
(27:17):
great examples of how to approach itso honestly and authentically. His little book,
so he created a book of atrip that we went on this last
year, and like every picture islike him, including Kay and he's helping
her to scuba dive. In someof the pictures it's like, yeah,
in the future, there'll be asuit or there'll be ventilated so that she
(27:40):
can scuba dive. It's like,well maybe, yeah, exactly, you're
going to be the engineer. Butwhat's cool about that is he's already thinking
in her future. Yea, whatcan be for her that isn't now,
but that like a world where she'seven more there's even a greater sense of
her belonging than it is now,which is profound for a seven year old.
(28:03):
That's awesome, amazing. I hopeyou saved that forever. So when
he does. Yes, we canshow him the first draft of the first
Yeah. He was really into StarWars and got fixated on the concept that
Darth Vader uses a ventilator and it'sbuilt into his suit, and so he's
he's like, we just have tomake Kaya mex suit where there's a ventilator
(28:25):
built in and then she can walkaround like a giant robot with a ventilator
built in. He's like, He'slike they already did in Star Wars,
Like, why aren't we making it. We're sending civilians in the space.
Let's get it together. Yeah,Kai's robot suit. Let's let's Yeah.
So it would shock me if hedidn't do something that facilitates some type of
(28:45):
adaptive equipment in the future. Yeah. Um, what has your experience with
um the medical field overall been,Like, we hear horror stories and we
hear um you know, places thatare really special because of the impact that's
been made by a doctor or anurse. And I'm just curious if there's
(29:07):
any moments in your journey so farwith Guy's medical history where this part of
our story stands out good or badbecause of this thing. I'd say that
we definitely haven't had any horror stories. We've had overall a very positive experience.
But it's very humbling to have adiagnosis that's so rare that you hear
(29:33):
the phrase from your doctors, oh, we've never heard of this before.
It doesn't instill a lot of confidencewhen that's the first thing, or when
you're meeting a new specialist and theywant you to edge you as the parent
to educate about the diagnosis. Now, we're used to it, but when
she was tiny, I remember havingthis feeling of wait, aren't you supposed
to tell me what you know?The plan is here? And and so
(29:57):
that was definitely a paradigm shift forme to understand that it was our responsibility
to be as educated as possible aboutthe diagnosis specific care so that we could
advocate for her and make sure thather doctors knew what was the most relevant
and appropriate things to support her.So that was a big eye opening experience
(30:21):
for me. I will say thather neurologist here is amazing. He is
very knowledgeable about her diagnosis and proactiveabout learning about new treatment plans or ways
that he can support. So wereally really have had a good experience with
him. And our nurses, ournurses in every she was in three different
(30:45):
facilities, you know, from oneNIKU to another NIKU to a long term
acute care facility. And then ourhome health nurses are the we call him
Team Kai. They are everything tous because I think the nurses in any
type of medical environment are the onesthat really get it. They're the ones
(31:07):
that are doing the patient care.And am they doing it quietly? Yes?
They need recognition more. I feelthey do such an important job.
Yes, let's not step past though, the fact that you are an incredible
advocate and you fight with insurance anddurable medical device providers, and you have
a full time job on your handnavigating the sometimes tricky world of insurance and
(31:37):
advocating providing for our daughter adequately.So thank you. It's hard work and
to really help your kiddo, youknow, have the best life. That
is an uphill battle that needs tobe fought. Yeah, that's true.
That's true. That that was somethingthat people talked about, but I didn't
(31:59):
really understand until we came home.Is I joke that I'm high secretary.
That's my full time job. Youknow, I'm her caregiver secondary to being
her secretary because the amount of timethat is spent just making sure that the
right supplies come on time and youknow, the therapies get approved or you
know anything, where did that missingpackage end up? Um? It is
(32:20):
a full time job. Um,legitimately a full time job. Yeah.
Yeah, which because we have thenursing support that we have, I'm able
to do that. Um. Andyeah, we have a good team.
I don't think we've ever talked toa family that doesn't have at least a
handful of insurance battle stories. Um, so you net you said, you
(32:45):
said it the nicest way I thinkanyone's dealing with insurance, because Kate's the
one that handles all that was inthe trenches. I'd have a lot more
a stronger, a stronger word toput towards that. Yeah, I'm curious,
(33:07):
Kate, how would you describe Drewnow as opposed to the man that
you married? Ooh, that's hardfor me to do without crying. I
think the word I would use isevolution. I feel like when Drew and
(33:28):
I got married, we were youngand naive, and you know, and
when we got married, I rememberI can't remember if as my mom or
someone said that Drew is the epitomeof raw potential, you know, just
like he has a heart of gold. And I think that it's the hard
stuff in life that refines us.And I'm very very grateful for the man
(33:58):
and father that this phase has refinedDrew into, because I'm definitely getting the
best version of him that I've everhad now, and our kids are very
lucky to have not only a fundad, but someone who genuinely is so
loving and kind and tender with them. So it's been a very beautiful thing
(34:22):
to watch and definitely a silver liningthrough the harder stuff, Drew, did
she tell you that quote of rawpotential back then? No, she did
not tell me that. But I'mglad to hear that someone's not the potential.
(34:42):
But you don't get off the hook. What's the same question for you?
How is Kate different than the womanyou married? Well, when I
married Kate, when we first starteddating, I thought she was perfect then,
but I had no idea that shecould be who she is now.
She is incredible. She has madeevery single change or sacrifice that our family
(35:10):
has has needed. And I seesomeone that has the biggest heart that I've
ever recognizing someone you love everyone unconditionally, and I had no idea your power
to influence people around these lives.I don't know anyone that doesn't like you.
(35:34):
I'm sure you know plenty of peoplethat doesn't like me. I don't
know anyone that doesn't love or gushover you, And so that speaks to
how incredible of a woman you are, how much of a resource to people
you are emotionally, and we're allbetter for it. Thank you, Geez.
I don't know about you, butI want to go hug my husband.
(36:00):
You can tell that you guys haveworked hard to keep this the way
it is right now, and youguys are don't an amazing job. It's
also a part time therapist for me, so I have too therapists. She's
amazing at that. That's great.I don't have any questions. There's any
(36:23):
part of your story that we didn'ttouch on that you feel strongly you'd like
to talk about. This is yourchance. What would you tell mom,
who's her first name in the nickand she has no idea what's about to
be in her future? What wouldyou tell her? I would say that
(36:47):
everything you're afraid of and everything thatyou're searching for you have within you like
there's no one else that can dothis job better than you, and you
you just have to dig deep andlean in, lean into the discomfort,
lean into the heart, and allowit to mold you, because you are
(37:15):
the only person that can be thebest parent to this child. And it's
the most overwhelming phase. I'd saythat the beginning was the most raw phase
for us. That's the only wordI can think of, because you just
feel like you've been stripped bare,and every insecurity, every trigger point in
(37:37):
your marriage, everything is so raw, and I think you only can pass
through it by leaning in and justdoing it one minute at a time,
one day at a time. AndI remember thinking, there's absolutely no way
(38:00):
that I am capable of learning thismedical stuff, and now it's my full
time language, and I have toremind myself that not everyone speaks the medical
language, and how you are justcapable of everything that you don't believe you
are, and you just keep goingand find if you don't have an answer,
(38:23):
find someone who does. Find yourexperts. We have found the most
comfort and support from other families andindividuals with the same or similar diagnosis to
Kai. They have been the oneswho have been our guides, and when
you have either no diagnosis or arare diagnosis and there's not a clear path,
(38:50):
social media is a great way tofind people that are doing what you're
doing and can give you hope.It was like looking at other families social
media and seeing all the things thattheir kids were doing that gave us hope
the day that we received the diagnosisand every day since and now all we
(39:14):
want to do is make sure thatother people see the joy that this life
has, that this is the goodstuff. You know, you have to
kind of learn and grow and getthrough some of the hard stuff, but
it's such a full and better lifethan we could have imagined or created for
(39:35):
ourselves. At Go Shout Love,we do amazing things for amazing families with
kids on rare medical journeys. Eachmonth we shout love for families through the
sale of creative apparel inspired by thekids. This month's make Waves design is
inspired by Kai, a sassy andtenacious girl who turns four years old this
(39:55):
month. Kai models perfectly for uswhat it looks like to live a bold
and unapologetic life and be yourself.Every purchase in May will be used to
purchase a special needs flotation device sothat Kai can participate in aquatherapy as well
as swimming with her brother and family. Visit our website at goshout dot love
(40:15):
to support Kai through the purchase ofa T shirt, hat, tank top,
hoodie, or other items
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