Speaker 1: Hey all, we hope you enjoyed your Christmas. We know
some of you are new here, so we figured we
take a trip down memory lane.
Speaker 2: Here's a deep dive replay that'll help you get to
know us just a little bit better.
Speaker 1: We hope you enjoy it. This topic that we're doing
today is like years in the making. People have been
asking about this particular subject for years and we've never
done this, and so I think it's long overdue that
we talk about this. We're going to be talking about
your son Thomas, and we have questions. I know that
you asked the questions you asked our insiders and locals, folks, Hey,
what kind of questions do you have about my son Thomas?
And they came up with some questions. Oh my god,
so many, yeah, so many. So I think you narrow
some of those down, try to encapsulate the questions that
people had and try to narrow them down so we
could get through some of them today. But I know that,
like the I wanted to at least sort of kick
it off with one of the first times or the
first time that I met you. People can listen to
our story and how we met, but the first time
that I met you. It was during a job interview
that turned into like, oh my god, did we just
become best friends session? Yes, it was just like the
serendipitous meeting. And one of the things that you talked
about with me was Thomas. I don't think you remember that.
I don't. I totally do not remember this. Yeah, it
was and it wasn't like you went on and on
and on about him. But you know, when I first
met you, I just remember thinking, self, she's so happy,
you know. And not that that's a bad thing, but
when people are so have this such a happy, positive disposition,
sometimes I can be a little leery, you know, because
unless that person has gone through some stuff, I'm not
real sure if that person and I are going to
be some potigo, you know. And because I've gone through
some stuff and you have gone through some stuff, and
but the way that you handle it, and I think
in that moment when you started talking to me about Thomas,
I was like, wow, she just the way that you
talked about him, and and in the very it was
a very abbreviated way that you you talked about him.
It's not like you went on and on, but just
the abbreviated way that you talked about him, and you
did it in such a positive way, and that just
I don't know your disposition about him. I thought we're
going to be really good friends, this chick and I
because I just loved it, and I loved like your
face lit up when you talked about him and there
was just nothing negative about him or his disability or
just anything. I just loved it. I just I'll never
forget that day talking to you about all the things
that we talked about and how we basically became best
friends that day, But just the way that you talked
about him, and I'll get emotional talking about it, but
he's just a but it was just a It was
really cool the way you talked about him, and how
you've always has been very positive about him and positive
about taking care of him, and it's never been like
a burden or anything like that. Like I hate to
even use that word, but it's always been a joy
to have him. And I love that about you. I
love that about both of you. I just love that
about Thomas. Yeah, well, Annyway, it's a very special, special boy.
Speaker 2: Yeah yeah, and there you know, I don't know why,
I guess I don't know why we haven't spent time
talking about him and his story in the past.
Speaker 1: I don't know.
Speaker 2: Maybe it's just because, like we've always been focused on
politics and cultural things and not as much personal stuff.
But now that we have these like two communities, like
the local supporters and the insiders who you know there
are like number one like primo fans, right, And so
it's it makes sense that the more they get to
know us personally, the more that they attend meet and greets,
the more that they interact with us, there's curiosity about
the more.
Speaker 1: They want to knives, the more they want to know, right.
Speaker 2: Yeah, And so I didn't really you know, if you
would have said, let's just have a deep dive about
Thomas and just say whatever it is that you want
to say about him, I would have no clue where
to start, because I have I've you know, I've been
his mom for twenty seven years.
Speaker 1: So to me, I.
Speaker 2: Don't know what other people see and are curious about.
And that's why I reached out to everybody to say,
what are your questions? And there were definitely themes, like
there were definite people had Like a lot of people
have the same question right, So I figured, well, this
is this is going to be pretty easy to make
sure that people get their primary questions answered. And then
there was just so many that I don't know that
we'll get to all of them, but we'll, you know,
we'll get to a lot.
Speaker 1: And I think it's important for us to talk about
that because you and I've been doing this for fifteen
years now, and I think that just in the past week,
you know, like you put up a birthday post that
showed his picture, and there was some nastiness coming back
in you. Just not a lot. I mean, there's just
a touch, like maybe one couple, just a couple, little tiny,
teeny tiny handful, because people will make assumptions. You know,
jackasses out there will make assumptions about your life, my life.
They'll just make assumptions about people that they think that
they know because they see us every day, but they
don't know, they don't know about your life. So I
think that's another important reason to go, Okay, well you
want to know, we'll answer some questions about Yeah.
Speaker 2: I mean, I've always been in an open book about
right about him, about everything really, and so it's not
you know, it's not for shame you know, it's not
we haven't not talked about him because we're like I'm
like ashamed of him, or don't or I want to
keep it in private or anything like that.
Speaker 1: It's not about that at all.
Speaker 2: It's just like there's so much news all the time
that I always feel like, well, my life, that doesn't
mean anything.
Speaker 1: That's exactly I think we both feel that way. It's like,
why are people why would they be interested in our lives?
Our lives are completely boring. Yeah, right, as you know,
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Speaker 2: So I think the primary question to answer right out
of the gate is because some people are not aware
of this, and I was surprised, And then I was like,
why am I surprised? These people don't know all the
ins and outs of my personal history, so why would
it surprise me that some people are just now discovering
that my husband Ron is not Thomas's biological dad.
Speaker 1: Of course, they wouldn't know that.
Speaker 2: Necessarily, and so I guess it makes most sense to
tell the story with how Thomas came to be, And
that starts with me getting married basically right out of
high school to my high school sweetheart who joined the military.
And the reason we got married so young is so
that because he was in the Air Force and he
got stationed in Okinawa, immediately I wanted to join him.
I was madly in love with him, and I wanted
to be with him, and so that was the simple
way to do that, right, get married as an absolute child.
When I think about the pain I caused my parents,
oh my got so.
Speaker 1: But anyway, Mack was a child bride. She was a
child bride.
Speaker 2: Seriously, Like, I turned eighteen and got married like three
weeks later.
Speaker 1: And it's crazy because it was like two weeks. And
it's crazy now because you have an eighteen year old
son and you're probably looking at that going, oh my god,
can you imagine Jackson, Oh I'm married right now? Oh
my gosh, there's no way, no right. Oh different back
then anyway.
Speaker 2: So anyway, so we were married for a good long
while and at about I want to say, ten years
into our marriage. We were we were married for almost
eleven and ten about well about eight or nine years
in that's when we started thinking because we were really
really young and so but there was a moment where
I decided I want to be a mom, like more
than anything in the.
Speaker 1: Whole wide world.
Speaker 2: And unfortunately it wasn't easy, Like we had to go
through a lot of infertility mumbo jumbo. Never got to
the point of doing like in vitro or anything like that,
but like did some artificial insemination and drugs and all
that kind of stuff to boost our chances, and lo
and behold, I became pregnant with twins, and so that
I didn't know that until.
Speaker 1: I lost one of them very very early on.
Speaker 2: So I want to say I was I don't know,
seven weeks into the pregnancy, and I was delighted to
be pregnant, like you have no idea.
Speaker 1: I was over the moon.
Speaker 2: I was so so so happy, we both were, and
super super excited to be pregnant. And then at thirteen
weeks I started bleeding and was crushed. We went to
the emergency room and I was told in the emergency
room to prepare for the loss of Thomas, who was
the remaining.
Speaker 1: Child because I.
Speaker 2: Bled early on, lost to twin early on, and actually
Thomas got his name because it means twin. That's how
I sort of landed on that name is because it
means twin. And so at thirteen weeks, I had a
placental abruption and that's why I started bleeding, and Thomas
was a huge risk and so went to the emergency
room was told here's a cup, you know, like try
to catch what you can, but you're gonna lose this baby.
And so when I went to go see my obgyn
a couple days later, she did an ultrasound and he
was fine, and so it was like this amazing miracle
and it was super joyous and we were super excited.
And I continued on with my pregnancy as a high
risk person, and I had the worst pregnancy ever, Like
it was I had the sciatica, like I was miserably uncomfortable,
and then I developed at twenty eight weeks, I thought
I was okay, but like at twenty eight weeks, I
developed pre eclamsia, which I didn't know anything about at
the time because when you're a new time pregnant person,
you just assume everything's gonna go great because women have
been having babies for billions of years and they are
good at it. So I didn't look at all the
scary stories. I thought, oh, that happens to other women.
But everything was happening to me. So I'm just not
a good pregnant person. And when I went to my
twenty eight week checkup, and you know how they immediately
take your blood pressure, she said, she took my blood pressure.
Speaker 1: I don't know what it was.
Speaker 2: It was sky high, and she immediately said, get on
your left side. I'm calling an ambulance because I was
at a doctor's office in a hospital that did not
have nick you type of care. They were not equipped
to deal with a premature delivery at that young at
twenty eight weeks.
Speaker 1: And I'm just like, what are you talking about?
Speaker 2: I feel fine, Like this is crazy, and I joked
all the way downtown in the ambulance ride. I was
like making fun of everything. I was like, this is
so stupid. There's got to be some mistake. This is crazy.
What I didn't know is that I was very very
very very very ill, and I didn't know how dangerous
preclamsy it was. But long story short, the Saturdays. I
was in the hospital for a few days during the week.
Saturday that's when things got really really bad. And so
on a Saturday, which I mentioned it was a Saturday
because it was a teaching hospital and there were no
staff physicians there on the Saturday, was all like residents
and kids and learning people and not anybody that really wanted.
Speaker 1: To take control of the situation.
Speaker 2: So I had a monitor on that was monitoring Thomas's
heartbeat after each contraction. I was in labor for I
don't know, eight hours or so, and every single contraction
his heart would decelerate. And I didn't know enough at
the time to like demand an emergency sea section. I
don't I'm twenty eight or whatever, twenty seven, I have
no idea, and so I just went with it. They
weren't making a huge fuss about it, so I wasn't either.
And then finally a staff physician arrived for the night,
took one look at all of the tapes that had
been gathered throughout the day, and then immediately called it
an emergency. I was wheeled in, got the sea section,
he came out completely blue, and they did all the
things to make him not blue anymore, but the fact
remained that he had the cord around his neck and
he lost oxygen for way too long of a time.
And so what we found out I think about six
days later, because to us, he looked perfect, right like,
once they revived him, he looked perfect. He was just
very small, he was three pounds and two ounces when
he was born, but he looked physically fine, and so
I was like, yay, I was still recovering and very
very ill, and not even realizing that I was at
death's door apparently because I just couldn't believe that because
I felt okay. But we found out when they did
a brain ultrasound that he was anything but okay. And
so he ended up had like CP. When I say
that he has CP, that stands for cerebral palsy for
people who may not know that. And so what that
does is it affects the motor area of your brain
and there's varying levels of CP. You probably know someone
with CP that walks around and talks and is fine. Unfortunately,
Thomas's CP also came with something called PVL, which stands
for periventricular luco Malaysia. I learned a lot in those
early days, and that just meant that the white matter
of his brain was also deeply impacted by injury and
lack of oxygen. And so we were told that he
wouldn't see, he wouldn't hear, he wouldn't I mean, he
would essentially be a vegetable. And so that's how I
went home, is knowing that, and I cried for days.
I mean, I you know, you say and people say, oh,
you're so happy and positive, but it's not that I
didn't have a complete breakdown.
Speaker 1: Like of course, I was a mess and absolute mess.
Speaker 2: I probably slept and cried interchangeably NonStop for two or
three days. And then I just you get to a
point where you're like, Okay, well I can either continue
to sleep and cry or I can just live with
this and move forward. And I have a kid that
I've got to take care of and I've got to
figure out.
Speaker 1: How to do that. And so, you know, he was
a nick you for quite some time.
Speaker 2: He came home, I want to say, like six or
seven weeks later. The problem is is that when I
emerged from my room to stop crying, and sleeping.
Speaker 1: My husband at the time did.
Speaker 2: Not, so there was I reached a point where I
was like, Okay, I've got this, you know what I mean, Yeah,
let's do this. We can do this, and we're going
to love him all the same. But he just never
got there and just handled it in a very very
different way. And I will say just a side note
that if you are a mom of a child with
disabilities and you have never read the poem Welcome to Holland,
I literally attribute that to saving me, like that poem
saved my soul.
Speaker 1: In essence. In essence, what's a synopsis of it?
Speaker 2: So the synopsis is that when you're expecting a baby,
you are planning a trip to Paris, for example, and
you have all these dreams and hopes about how amazing
Paris is going to be, and you're going to see
the Eiffel Tower and you're gonna do all these incredible
things and see the best of Paris. And then you
step off the plane and you realize there's been a mistake.
You've landed in Holland. And so it's a different, different
kind of journey. It's a different kind of trip, but
it still has so much beauty if you just allow
yourself to see it. And it was that perspective that
I was like, oh my gosh, that it just it
just completely shifted my entire thinking about, you know, getting
out of that woe is Me mentality and just jumping
in into being a mom of a special needs boy
like that poem changed my life, literally changed my life.
Speaker 1: Tulips. There are tulips. There, you go, there's tulips. Beautiful,
beautiful tulips. Yeah, that's right.
Speaker 2: So that saved me, but unfortunately it did not have
any impact on my ex and so we you know,
we did the best we could. I you know, I
tried to give him grace, but then he became such
an asshole later that it's hard to maintain grace.
Speaker 1: And I know you have a lot to say about that. Yes,
at some point you just say, you know what, I
can do this on my own right, and I cannot.
I'm parenting this kid that has CP and I don't
have time to deal with your craps. So I'm going
to go ahead and just let you go. Yeah.
Speaker 2: So, I you know, I tried everything I could to
break him out of his shell and be in this
with me for a solid year and by the end
of nineteen ninety seven, which is the year because my
Thomas was born in January, and by around December, it
was just untenable. He was never you know, I don't
want to make I want to make clear he was
not abusive to me or anything like that, but he
was mean. He was cold and distant and not supportive
and just not in.
Speaker 1: It with me. And so which can be just as bad.
Which is bad. Yeah, it can be just as bad
as somebody. I mean, seriously, it can be. Yeah.
Speaker 2: And it got to the point I think he was
doing it on purpose, like he was being mean on
purpose so that I would be the one to end
the marriage, right, And that was a very cowardly thing
on his part, But ultimately it worked because I couldn't
take it anymore. And so I was just like, you
have got to go, like you have to leave, and
I'll just do this on my own. And for a while,
you know, I thought, well, maybe we can go to counseling.
We went to one counseling session and I was like,
this is this is utterly pointless, Like this is just
it's just not going to work. And so he left
and there was a long period of time that he
sort of kind of pretended to be engaged. He would
send a little money here and there, he never at
any time paid the amount of child support that he
was supposed to, and I didn't want to deal with
courts and all of that, and so I was just like,
at some point it just got to be I got
tired of asking for help, and I finally just said,
just you know what, just pretend you never had a son,
and I'll I've got this on my own now. And
then we didn't speak for like three years. He is
he continues to not be involved nor his family. I
don't hear from anybody and his family ever. But he
has apologized at least three or four times now in
these very genuine and sincere, I believe messages to me
where he has said very very like complimentary and glowing
things about how I handled Thomas and had what a
good mom, right, what a good mom I've been. How
he feels tremendous guilt about his lack of ability.
Speaker 1: To do the same thing he also should. So, I mean,
I'm glad, I don't you know, I don't.
Speaker 2: I don't care enough about him to worry about his feelings,
and so a lot of times when he has said that,
I'll just be like, you know, thanks, but I'm if
you're asking me to forgive you or give you a pass, uh.
Speaker 1: Yeah, between to do that. That's between you and your maker, dude, right,
I'm sorry, because like you and I we've been friends
for a long time. I just don't have a lot
of talk. I don't have any tolerance for people who
abandoned their children. That's yeah, that and a lot of
that has to do with my own hang ups and
my own background, but I just don't have tolerance for that.
You abandon your kid and you're muck, so yeah, yeah,
and you abandon He abandoned you too, Yeah, abandoned. Not
only did he abandon his kid, but he abandoned you
at a time where you really needed that help. So
I just don't have a lot of tolerance for that.
He can ask for forgiveness or whatever, but he needs
to take that up with his maker. Sorry.
Speaker 2: Yeah, well, and I get maybe the reason that I
do that I don't have like a huge bunch of
what's the word like animosity towards him now is because
I believe that all of that led to where I
am now like it led to me finding Ron, it
led to me having Jackson, and so I can't be
mad about that, right because like, man, what a different
world it is? Now?
Speaker 1: What a different marriage?
Speaker 2: I mean, I thought my marriage to him was okay,
but now I realize what how just mediocre and average
and not really all that special it was? Because now
I have what I'm supposed to have and it's a
huge difference. And I mean that's yeah, I mean that's
a whole So I can't I can't really hold a
lot of hostility towards him because of how good life
is today.
Speaker 1: Okay, so then speak So then speaking of that, so
you get so he gets, he moves out. So you're
with Thomas and you're by yourself and you obviously I'm
assuming your parents were around to help out a little bit, right,
So you.
Speaker 2: Had my parentid Actually my ex's sister was still very
much engaged and helping me while I worked.
Speaker 1: She was taking care of him. And say, at that
full time she was still there. Yeah, you were still
you were working. You've always worked full time, so you
were working, you had some help. And then like, okay,
so then how long was it before you met Ron.
Speaker 2: Well, that's an interesting thing because as when Mike left,
and of course I was devastated about the end of
my marriage, and I was convinced at the tender age
of whatever I was, twenty eight or twenty nine, I
was sure that having and you know, and it is
it's a it's an ugly word, but having the burden
of a child with such extraordinary special needs, I genuinely
believed I would never even have another kiss from a
from a man as long as I lived. Like I
was like, there's no way anybody's gonna want anything to
do with me after this. This is like I would
never This is like a burden I can't expect anybody
else to shoulder.
Speaker 1: And so I was convinced of it.
Speaker 2: I went and saw a therapist who completely set me straight,
and she was fantastic.
Speaker 1: I'll never forget her.
Speaker 2: I only saw her once, but her name was Reagan,
and she said, you are so arrogant to have that attitude.
How dare you think that you're the only one that
can love your son? And I was like, oh damn.
I was like, yeah, slap in the face of reality.
But it was what I needed, and I went home
after that session with her, and I was just like,
I am this is I'm gonna be fine.
Speaker 1: I'm gonna be fine.
Speaker 2: And I went out to like, I went out with
my friends to the bars, and I thought, you know,
I'm young, I'm gonna party it up.
Speaker 1: I'm gonna find somebody.
Speaker 2: And like, I found some young guy who was like
twenty one at the time, and like, I had make
out sessions with him for a few weeks, and I
was just like, you know, living my.
Speaker 1: Best life right right.
Speaker 2: And then I was set up with who worked with
a guy whose wife I worked with, and they set
us up and we met at a Memorial Day barbecue
at their lake house that same May.
Speaker 1: So Mike left in.
Speaker 2: January, and in May, five months later, yeah, five months later,
I met Ron. And then a few weeks after we met,
he called. He lived in Columbus, Ohio at the time,
but he called and came to Indy and wanted to
have a lunch date. So we did that, and then
he had a headache. I'll never forget this, because he
had a really bad headache. Came to my house after
lunch and fell asleep on my couch and I remember
sitting there like this, looking at him and saying to
myself that day, I'm going to marry that guy. And
I did.
Speaker 1: So I love it. I love it so much.
Speaker 2: And then he met Thomas that day, but he knew
about him immediately. And it was so funny because so
many people said, don't tell him, like, I know you're
excited about this date. Do not tell him about Thomas.
That's going to completely overwhelm him. Send him packing.
Speaker 1: Oh yeah. I had so much advice.
Speaker 2: From my parents too, who were like, just you know,
that's not something that you say to somebody on a
first date.
Speaker 1: And I was I thought to myself, Yeah, that's probably right.
I mean this, it's so funny. Beca I knew Ron,
I grew up with Ron, Yeah, I wouldn't have And
if I would have known you, which I didn't know
you until later on in life, but if I would
have known you and I would have known you were
going on a date with Ron, I wouldn't have said that.
I wouldn't have said that. I would have been like,
tell him, he's totally cool. He would he'll love him,
He'll love Thomas. He'll I won't scare him, it won't. Yeah,
I don't it wouldn't have scared I don't. I mean,
just knowing who he is as a person, I just yeah,
I wouldn't have I wouldn't have said that. I would
have been like, it's not going to scare him, it's
not going to freak him out. It's going to be fine.
Speaker 2: And I told him at lunch, like on our first date,
I said, so listen, I you know, I can't I
don't know how to say this except to just say it,
but you need to know that I have a son
and he's kind of a mess, like he's got a
lot of disabilities, and I just felt like I needed
to say that to you upfront in case that that's
a problem. And he goes, why would that be a problem,
and I was like, well, it was a problem for
his dad, So that's why I just wanted to make
sure that I just say it out loud and upfront.
And he was like, well, your ex sounds like a
huge prick. Those were his words, and I was like,
I'm totally going to marry this guy, so.
Speaker 1: I know.
Speaker 2: I mean, he's and he's been amazing obviously this entire time.
So okay, So that gets I think that answers like
the whole How did this? How did how did we
get to where we are? So?
Speaker 1: Then how quick was it until you got married? So
we got married, we got engaged.
Speaker 2: So we started dating in June of nineteen ninety eight,
and we got engaged Valentine's Day of nineteen ninety nine.
Speaker 1: And got married in November of two thousand. I love
that so And then then Jackson was born five right.
Speaker 2: Yeah, into our marriage, and I people that was one
of the questions people asked, is were you scared to
have another kid?
Speaker 1: So scared you guys?
Speaker 2: And so convinced that I couldn't because of the problems
I had before that, we went and saw like what
do they call those period natologists and like all kinds
of you know, super like high risk pregnancy people for consultations,
and we were told that there were some scientific studies
that seemed to suggest that a different father could make
a difference.
Speaker 1: In your pregnancy.
Speaker 2: And so I held on to that with some hope,
thinking okay, well, maybe it'll be easier this time around,
And unfortunately it was not.
Speaker 1: So it was a disaster.
Speaker 2: I once again had a disastrous pregnancy and in fact
delivered Jackson two weeks earlier, earlier than I did Thomas,
so he was two pounds and five ounces, and he
also had the same brain ultrasound which also showed bleeds
in his brain. And I remember getting that news and
really feeling like I could not handle it, Like I
thought I was going to have a nervous breakdown, and
but Ron held everything together and he was like, it
doesn't matter what happens, We're gonna do this and it's
gonna be okay. And we've got this and somehow, by
some miracle and a lot of prayer, Jackson is a
completely healthy, perfect, strong, amazing, perfect human.
Speaker 1: I think it's just incredible.
Speaker 2: So, yes, I was scared to have another and but
I'm super glad I did. Obviously, Ron got snipped shortly
thereafter because I was like, I can't do this again.
I will die. And that's actually what the doctors said.
They were like, you can't no more. Like no, Mas,
you are done being pregnant. That's right, that's it for you.
So one of the other big questions was what are
the extent of Thomas's disabilities and like, you know.
Speaker 1: What is he like, what does he know? How does
he communicate?
Speaker 2: I would say it's very hard to answer that question.
Like people will say, like, what age would you put
him at? Mentally, It's impossible to answer that question because
I don't know. Like physically, he is one hundred percent
a quadriplegic. He has no functional use of his arms
and legs. He's very tight and stiff due to the
CP he is he suffered, you know, obviously mental deficiencies
as well. He's completely mentally retarded. I have no problem
using that word, and it's the truth. I would say
he has the I guess the intelligence level of a
two or three month old. I'm not sure, except that
I know he recognizes certain words and people and music,
and he's very, very joyful.
Speaker 1: So you know, it's hard to like put a age
on that.
Speaker 2: I don't know how to how to really say that,
but he's he requires complete and total care, which we
obviously gave him, gave him for twenty four straight years
until it became too untenable on us physically, and so
I know, you know, this is the whole fight I
had on Instagram as this woman judged me for putting
him into a twenty four hour care home with two
lovely roommates at the time and it was a heartbreaking decision.
Speaker 1: I can't. I mean there's no two ways around that.
Speaker 2: Like, it was devastating but also super necessary for us
to be a normal family for Jackson because we could
never go anywhere together. We either had Thomas in a
wheelchair van that had one seat, or we had the
three of us and Thomas was being babysat by someone. Like.
We could never do anything as a full family, right,
and it was starting to affect our ability to give
Jackson the life that he deserved.
Speaker 1: And we were breaking apart physically. I mean, I meanything
used to have a bad back. Yeah, I don't think
that people understand, like it's because these he grew up,
he got bigger, he got bigger, and like as you
I remember you know because I met you fifteen years ago,
he was smaller because he was younger, and as he
got bigger, he got older, he got bigger. You had
to pick him up and to take care of him.
I mean, I think people forget that. They think that
he's a child. He's twenty seven years old. Now he's
twenty seven, so imagine pick I mean, granted he's not
as big physically as a as a I think I
don't want to say regular as a as your can
as an every day like as as say as my
twenty seven year old son. Right, he's not as big
as Chase, right, And Chase is thirty now, he's not
as big as what Chase was when he was twenty seven.
And but I mean, but he's still a twenty seven
year old man, right, And so I think people don't
they don't compute that in their brains because they're not
living your life. And so it's very easy to judge
when you're a sideline player. You're out here and you're
not living your life. And man, that pisses me off.
And people do that to you, oh my god, because
they've not met to they don't do it. They've not
lived your day to day life. They're not they're twenty
four to seven doing this, you know. And a lot
of people that do it to you are the people
that don't have the children. If they are mothers of
kids who are special needs, they're not mothers of your kid, right.
And then everybody's so different, right, everybody's different, And how
dare they pass judgment on you when they also have
a child whose special needs? And like you think that
they of all people, wouldn't past judgment. Yeah, I don't.
I don't get that. I know it was stunner.
Speaker 2: I mean, especially because it was coming from a mom
of a boy with CP who's one year older than Thomas,
and so I was just like, how can you? I mean,
that's great that you're able to keep him at home.
It looks like he can sit up and hold a
phone and hug you. Those are all things that Thomas
will never ever do. And so step off, lady.
Speaker 1: Yeah. And also and also how wonderful is that for you? Yeah? Exactly.
Speaker 2: I should take a moment too to point out that
I had extraordinary help. I mean, my parents were I
don't know what I would have done without my mom.
I mean she gave me and Ron so much time
to learn to know each other and date, like even
as we were married, right, she gave us date nights,
She gave us trips that we were able to take
because she would take Thomas while we traveled.
Speaker 1: I mean, she was amazing.
Speaker 2: And then we also had many many caregivers taking care
of Thomas through his early years, and then for twenty
years we had the same amazing caregiver. Shout out to
Jamie who I mean also just a complete godsend and
continues to be Thomas's very very best friend. So had
I mean, without that help, I don't know what I
would have done. So, you know, it has to be
stated that, like, I could not do this alone.
Speaker 1: I don't think anybody could. And so I was very
very lucky.
Speaker 2: To have like an amazing, amazing support system in place,
for sure. But yeah, that decision to move was excruciating. Thankfully,
he's fifteen minutes away. His house right now is fifteen
minutes away, and you know, so we're able to see
him whenever we want, which is great. We also have
the trust in his care team, which has been phenomenal.
And I found the home for him through stroke of
luck by meeting this amazing woman who owns an agency
that provides the caregivers, and she and I had breakfast
one day, and I just she was so amazing and
just such a wonderful, wonderful woman. I had every faith
in her to put him in the best possible care
and she has and I've been really really happy with it.
The other question people have, naturally, is what's going to
happen when you move South Carolina? Yeah, and that same
woman who was so mean to me on Instagram. It
was that same judgment in her tone. I know a
lot of our people are insiders and supporters. They genuinely
want to know because they're curious and they don't mean
anything malicious by it. But there's a lot that goes
into the fact that he's not coming with us. He's
going to stay in his house where he's very well
cared for, and we'll be coming back to Indy at
least four times a year to see him. And granted
that's not the same as him being fifteen minutes away,
but it doesn't change his care at all. And unfortunately,
he would not be able to get the same care
in South Carolina. So Indiana is actually one of the
very very best states in the nation in terms of
the benefits that they provide for people like Thomas. The
services that he receives, the care that he receives, the
house that he is a part of, all of that
would not be possible in South Carolina. And even if
it was the same, South Carolina requires that he would
be a resident for a certain i think for a
year before he'd be eligible to be put on a
waiting list for those services, none of which we could
afford on our own, and so that also fed into
the decision. It's not an easy one to leave him.
Speaker 1: But he he's he is in a very good situation,
and so that is the answer. And then you'll visit
and you'll visit him several times a year.
Speaker 2: Yeah, yeah, I just we're gonna come back four times
a year because that's required of my husband's job, and
so obviously we'll be doing that and seeing Thomas once.
Speaker 1: A quarter and that that will be that.
Speaker 2: So he'll continue to live his best life at his
current house where he has amazing caregivers. And I don't
feel guilt about that, and no one can make me right.
Speaker 1: And it's it's kind of like I mean, it's it's
you'll probably see him more than I see my adult children.
Great points. Yes, that's a great point. I mean, I'm
just putting it out there. I know that, like our
our thirty year old are now thirty year old. I'm
lucky if I see them maybe once or twice a year.
We talk to them every day, I'd say every day.
We talk to them a couple time, maybe like a
couple times a week. I mean, I know, we text
a lot. We mean more than a lot, right, But
I mean so maybe every if you count that as
talking every day. We do a lot of gifts and
stuff like that. When but seeing them in person, you're
going to see Thomas probably more than I see my
adult children. Honestly, that might be true unless they unless
you know, Chase decides to move here. So I'm just saying,
so a lot of people that have twenty seven year olds,
we get asked the question do you see them four
times a year? Are you if they're out of state?
You know, it's like and they you want you know,
they probably go off and they live their lives and
they do that usually around at twenty one. Yeah, well,
and you know what that reminds me.
Speaker 2: Shout out to Sea Nunes too, because I know she
has a child with special needs as well.
Speaker 1: Who she also has separate from her house.
Speaker 2: And she responded to that beach on Instagram and made
a really fantastic point, and that is she wants to
be able to feel comfortable that once she's gone, her
son will still be cared.
Speaker 1: For and still have a play point.
Speaker 2: And I was like, that is a great I hadn't
even thought that far ahead, but that was such a
fantastic point.
Speaker 1: You're not going to be We're not going to be
here forever.
Speaker 2: You know, that's something I had never even considered as
part of the decision making and moving him out, And
it's such a great point that I won't be here forever.
Speaker 1: And if he does outlive me, then I.
Speaker 2: Want to know that he's in a good place, right
and I know he is, and you know he is,
and you feel great about that, and that's that's a
great thing. That's a fantastic thing, And that's what you're
supposed to do as a parent, whether no matter who
that kid is, you're trying to set that kid up
for being in a place where they're somewhat independent and
they're taken care of whatever that looks like, that looks
like in their particular situation. I mean, it looks different
for me than it does for you. It looks different
than for my boy than it does for your boy,
But in either case they're taken care of.
Speaker 1: Yeah, yeah, that's exactly right.
Speaker 2: And you know there have been is I'm not trying
to say that all caregivers have been perfect, and we've
actually fired one.
Speaker 1: I know that.
Speaker 2: That was another question and you know, so it there's
some that aren't great, and so I'm obviously very on
top of that and cognizant of that and and check
in quite a bit. And but but also the primary
ones who do care for him, who have been around forever,
they are phenomenal, and I just couldn't feel more comfortable
about the fact that they know. Also when there's a
caregiver that's not treating him exactly the way that they
would and he's never been mistreated, but you know, there's
just some people that give him more engagement than others.
Speaker 1: And so that's important to me. And I just will say,
like if there's one thing I've there's a lot of
things I know about Miriam about mock since we are
best friends and she is a freaking control freak, you guys, Like,
I mean, it just is what it is, Like, it's me,
she's she is. She's a control freak, like in about
everything and that Like sometimes that's annoying, but at the
same time, I kind of love it. I've learned to like,
I've learned to love it over the past fifteen years.
And she's like that in her personal life. She's like that.
So when you see like with their kids, with their activities,
with who they are like when it comes to Thomas,
I've seen her in action. She is a control freak.
So I would imagine if somebody is not like maybe
just the best caretaker, she's probably gonna be like, that's
not gonna fly, need you and needs you to go
ahead and skidattle it needs you to go. Yeah.
Speaker 2: So now people want to know how he's doing now
and he and is he in pain? Last year I
would have given you a very different answer than this year.
So last year was a rough year for him. And
the hardest thing about Thomas is he can't communicate. It's
always a guessing game. If he's upset and whining and moaning,
we have no idea does he have an itch that
he can't scratch, or does he have something internally going
on that's causing him real pain. I mean he's had
I can't even count the number of surgeries he's had.
You know, he's fed with a G tube, he's got
a permanent catheter. You know, there's he's had a spinal
fusion and then he's had all of that fuse spine
ripped out. Like he's gone through so much that of
excruciating pain that I cannot even begin to imagine. So
every time, you know, he's just having a regular day
and he's uncomfortable, I don't know where.
Speaker 1: It's always a guessing game.
Speaker 2: We can give him tailan all, we can shift his position,
we can try all these things. Last year it was very,
very difficult, and we still don't know why he suffers
from kidney stones.
Speaker 1: Sometimes that can be a problem. We just never know.
Speaker 2: And last year when he came home for Christmas, it
was rough and my body was really I mean I
was hurting after he left that day because I was
constantly moving around trying to make him comfortable, hoping I
could figure out what is bothering. You never could, And
it was a really rough Christmas. This year, I don't
know why. We never do completely different. He's had a
much better year. He was a delight at Christmas time,
just so happy and comfort and just a joy. He
was joyful in the house. It was a joy to
have him in the house. He was just great. And
so you know, I guess, like every person, he has
his ups and downs. His downs are much more significant
than a regular person because of all of his disabilities.
But he's really good right now, He's really really good.
And he has defied expectations. That was another question. People
were like, you know what, what has he defied doctor's expectations.
His first pediatrician ever, who lasted three months before I
immediately left, told me that he would live to be twelve.
And then he told me that when Thomas was having
failure to thrive because he kept throwing up all of
the formula, and I was just determined not to do
this horrible procedure where they tie up the end of
his esophagus and make it impossible for him to throw up.
I was like, I'm not doing that to a three
month old. I'm not doing that. There's going to be
a better way, Like I'll give him, I'll get him
a G twoe whatever. And he told me that I
would responsible for his death if I didn't do that surgery,
and I was like, you're fired. Yeah. I immediately got
a different pediatrician who's been wonderful and who's been Jackson's
doctor too for his whole life.
Speaker 1: So yes, he defied all expectations.
Speaker 2: This doctor who said he'd lived to be twelve, Thomas
is like him twenty seven.
Speaker 1: Yeah, you can suck it. He should have a cape.
We should get Thomas a cape with the big tea
on it, like super Tea. He's a freaking superhero. This kid,
he's a superhero. And you're right, I mean all the
she talks about, all the surgeries. My god, just objectively,
I've washed over the past fifteen years, all the surgeries
this kid and you being in and out of the hospital,
and it's like, I just and then he'll just I
mean he had COVID, for Christ's say.
Speaker 2: Yeah, yeah, early on where I wasn't allowed to stay
in the hospital with him.
Speaker 1: It was horrible. I just remember all that, and I'm thinking,
he and then he's just like, yeah, I'm fine, I'm good,
it's all good. I got this. It's just like if
anybody is immunocompromised, it's him. And he's just like, no,
I mean this is fine. COVID. You can take COVID.
You see me. I've got worse thing to worry about.
It's like up yours, China virus. I got this. Yeah.
I mean, he's just an absolute rock star. This kid.
He unbelievable, a testament to the human like spirit.
Speaker 2: Yeah, he's he's completely and totally incredibly amazing. I think
the last question that just dealt with like moving him
out that I think it was actually that same person,
or maybe it was one of the insiders.
Speaker 1: I can't remember who.
Speaker 2: Asked it, but somebody was like, can you not just
have caregivers live with you?
Speaker 1: And that was never something that I.
Speaker 2: Could do in this house, Like we just simply don't
have the space for somebody to live here full time.
Speaker 1: And I don't have the money to do that either.
Speaker 2: That's not some people can afford that I can't, and
and I that's I don't have that kind of expendable cash.
And so again, you know, South Carolina does not provide
the same sorts of benefits that he receives here in Indiana,
where he's comfortable and safe, and I know he's in
a good space, so that's.
Speaker 1: Why he will stay here.
Speaker 2: And then I think the last thing is that I
wanted to make sure that I shouted out Pastor Shelley,
whose only question was how can we best support you?
Speaker 1: And I was like Pastor Shelley, right, I mean, that's
like we both were like, that is such a typical
question of Pastor Shelley, it really is.
Speaker 2: And that and she wasn't the only one. Like other
people were like, what can we do? And there's nothing
to be done. I mean there's you know, I guess
if I were going to give advice to strangers about
how best to support me, I would say, trust me
to make the best decisions for my kid, that's all.
Trust me that I know him best and that I
would never put him in harm's way, and that I
would always make decisions thinking about what's best for him.
That's the way to support me and other moms like me.
Speaker 1: Right, And if you continue to go after her, I
will cut you. Well.
Speaker 2: She blocked me on Instagram, and so yeah, a lot
of people went after her though, And thank you to
all those people who might be listening that did.
Speaker 1: Just I appreciate this off people just step off. Yeah, okay,
so you feel good, you feel like you like, now
you feel good?
Speaker 2: I think so. I mean I hope that I am hard.
Like it wasn't hard. I mean, you know, it's very
easy to talk about your own life because you're an
expert at it, right, Yeah, okay, I mean it wasn't hard,
And I hope I just hope that it I hope
that people.
Speaker 1: Got out of it what they wanted to get out
of it. That I think, Yeah, I think we answered
a lot of the questions most all of the questions
really that were posed to you. And if people have
any other questions, I'm sure you can get them in
the comments. We can look at some of the comments
from this one. But but yeah, I love Thomas. He's
an angel, an angel sent from heaven, and I'm glad
that we had an opportunity to talk about him today.
I'm glad that we need you too, and you too
until next time, We'll talk to you later. Thanks for watching.
Speaker 2: We'll be back in January sixth, so make sure to
tune in and bring a friend, Follow.
Speaker 1: Us and subscribe on YouTube, iTunes, Spotify, or wherever you
get your podcasts. Link in bio