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'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. On
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MyPillow dot com slash chicks chicks. So this is 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 gonna be talking about your son
Thomas. Yes, and we have questions. I know that you asked some
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 narrowed 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, 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 in the very it was a very
abbreviated way that 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 just 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 was a very special, special boy. Yeah, yeah,
and there were 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.
I don't know. 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 they want to know, the more they
want to know, right, 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, so to me, I 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 were 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. And I don't 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 of 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. 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 private or anything like that. It's not about that at all.
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 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,
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. Of course, they wouldn't know that 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 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 god. So
but anyway, was a child bride. She was a child bride. Seriously,
Like, I turned eighteen and got married like three weeks later. 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, I'm married right now? Oh
my gosh, there's no way, no right. Oh, different back then
anyway. 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 whole wide world. 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 I lost one of them very very early on.
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. I was over the moon. 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 child because I bled early on lost a twenty 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 have 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. I don't
know what it was. 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, and I'm just like, what are you talking about? 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 preclamcy 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 to take
control of the situation. 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 se 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. Like, of course, I was a
mess and absolute mess. 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 how to do that.
And so, you know, he was a nick you for quite some
time. 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, my husband at the time did not, And so
there was I reached a point where I was like, Okay, I've got
this, you know what I mean, 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 in
essence, in essence, what's a synopsis of it? 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 gonna be, and you're gonna 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 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. Tulips. There are tulips. There, you go,
there's tulips. Beautiful, beautiful tulips. Yeah, that's right. 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. 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 crap. So I'm going to go ahead and just let you
go. Yeah. 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 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. 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 in 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 to
do the same Thinghoul. So I mean, I'm glad, I don't you
know, I don't. 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 yeah, between that's between you
and your maker. Dude. 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 abandon 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 schmuck, so yeah, and you ban He abandoned you
too, Yeah, abandoned. Not only did he abandon his kid, but
he abandon 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.
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, what a different marriage?
I mean, I thought my Maryria 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. 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 had my Perramida. Actually
my ex's sister was still very much engaged and helping me while I worked.
She was taking care of him. And to 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?
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.
And so I was convinced of it. I went and saw a therapist who
completely set me straight, and she was fantastic. I'll never forget her.
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 mean, I was like, yeah, slap in the
face of reality. But it was what I needed. And I went home
after that that session with her, and I was just like, I am
this is I'm gonna be fine. I'm gonna be fine. 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.
I'm gonna find somebody. And like, I found some young guy who was
like twenty one at the time, and like, I had makeout sessions with
him for a few weeks, and I was just like, you know,
living my best life right right. And then I was set up with Ron,
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. So Mike left in 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 gonna
marry that guy, and I did so I love it. I love it
so much. And then he 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. Resent himpacking. Oh
yeah. I had so much advice from my parents too, who were like,
just you know, that's not something that you say to somebody on a
first date. And I was I thought to myself, Yeah, that's probably
right. I mean this, it's so funny. Care 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 it. 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's not going to scare him. It's not
going to freak him out. It's going to be fine. So I once
again made dinner last night, and I had all the colors, okay,
So I had the protein, I had the veggies, and I had the
potatoes. So I did from Omaha Steaks, because you know, I got
some of their seafood, which is just as amazing as their steaks. Oh
my gosh. We had already tried the red snapper. This time, I
made their lemon dill salmon, Oh my god. And it's so easy.
So comes frozen, already marinated in these individual packages. You just take them
out of the packages, throw them in the oven. Twelve minutes later you
have perfectly cooked lemon dill salmon. Tastes like it's from a restaurant. We
also had the individual scalloped potatoes, which are also amazing and so delicious.
And then I just made like some green beans whatever that's like. That sounds
really really good. You're so Poaladine. Now I don't even know who you
are. It's crazy that does sound amazing. I'm all about the pork jobs.
But listen, like it's Omaha Steaks, you guys. For a limited
time, you can go there Maha Steaks dot com slash Chicks. You can
get four free boneless chicken breasts and four free boneless pork chops with your order,
which those are my favorite. The pork chops, people are very underrated
the pork chops from Amaha Steaks. But go to Amha Steaks dot com slash
chicks and you can get this. Amaha Steaks dot com slash Chicks. Get
it. 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,
all your ex sounds like a huge prick. Those were his words, and
I was like, I'm totally going to marry this guy. So so I
know, 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 then
how quick was it until you got married? So we got married, we
got engaged. So we started dating in June of nineteen ninety eight, and
we got engaged Valentine's Day of nineteen ninety nine, and got married in November
of two thousand. I love that, okay. And then then Jackson was
born right yeah, five years into our marriage, and I people that was
one of the questions people asked is were you scared to have another kid?
So scared you guys, 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 in your pregnancy,
and so I held on too that with some hope, thinking Okay, well,
maybe it'll be easier this time around, and unfortunately it was not,
so it was a disaster. I once again had a disastrous pregnancy, and
in fact delivered Jackson two weeks 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. But Ron held everything together and he was like,
it doesn't matter what happens. We're going to do this and it's going to
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. I think it's just incredible. 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,
what is he like, what does he know? What? How does
he communicate? 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. So you know,
it's hard to like put an age on that. 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. I can't. I mean,
there's no two ways around that. 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, and it was starting
to affect our ability to give Jackson the life that he deserved. And we
were breaking apart physically. I mean, I mean, he 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. I mean, granted, he's not as big
physically as a as a I think, I don't want to say regulars as
you 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 too, 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 somebody is so different, right, everybody's different,
And how dear 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
pass judgment. Yeah, don't. I don't get that. I know it
was stunner. 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. Yeah. And also and also
how wonderful is that for you? Yeah? Exactly. 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 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 eight nights, She gave us trips that we were able to take
because she would take Thomas while we traveled. I mean, she was amazing.
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.
I don't think anybody could. And so I was very very lucky to have
like an amazing, amazing support system in place for sure. But yeah,
that decision to move him 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 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. 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 will
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,
but 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.
Yeah. Yeah, we're going to 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 a quarter and that that will be 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. 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 point. 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 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 gift
exchanges and stuff like that. But 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, unless you know, Chase decides to move here.
So I'm just saying, I so a lot of people that have twenty
seven year olds, we get asked the question do you see them for 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. Shout out to Sea Nunes too,
because I know she has a child with special needs as well, who
she also has separate from her house. And she responded to that biac 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
for and still have a play point. And I was like, that is
a great I hadn't even thought that far ahead, but that was such a
fantastic point. You're not going to be We're not going to be here forever.
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. And if he does outlive me, then I want
to know that he's in a good place, right, you and I know
he is, and you know he is right 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. Yeah, yeah,
that's exactly right. And you know there have been is that I'm not trying
to say that all caregivers have been perfect, and we've actually fired one,
I know, that was another question, and you know, so there's some
that aren't great, and so I'm obviously very on top of that and cognizant
of that and check in quite a bit. But also the primary ones who
do care for him, who've 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, 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 and 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 need you to go ahead to skidaddle, it needs you to go.
Yeah. So now people want to know how he's doing now and 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 if he's upset and whining and moaning, we have no
idea is it 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.
It's always a guessing game. 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. Sometimes that can be a problem. We just never know. 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 comfortable 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 two whatever. And
he told me that I would be responsible for his death if I didn't do
that surgery. And I was like, you're fired. And I immediately got
a different pediatrician who's been wonderful and who's been Jackson's doctor two for his whole
life. So yes, he defied all expectations. This doctor who said he'd
lived to be twelve. Thomas is like, Hi'm twenty seven. 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 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 say yeah
yeah early on where I wasn't allowed to stay in the hospital with him.
It was horrible. I just remember all that, and I'm thinking he and
the 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. COVID 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. Of this kid, he believed a testament to the
human like spirit. Yeah, 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.
I can't remember who asked it, but somebody was like, can you
not just have caregivers live with you? And that was never something that I
could do in this house, Like we just simply don't have the space for
somebody to live here full time. And I don't have the money to do
that either. That's not some people can afford that I can't, and that's
I don't have that kind of expendable cash. And so and 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 why he will stay here. And then I
think the last thing is that I wanted to make sure that I shouted out
Pastor Shelley, who's only question was how can we best support you? My
God? And I was like Pastor Shelley, right, I mean it's like
we both were like, that is such a typical question of Pastor Shelley,
it really is. And that and 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. Right,
And if you continue to go after her, I will cut you. Well.
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. Just I appreciate this. All off people step off?
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do it. Okay, So you feel good, you feel like you like?
Now you feel good? I think so. I mean, okay,
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 got out
of it what they wanted to get out of it. I think, Yeah,
I think we answered a lot of the questions most all of the questions
really that we 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 set from heaven, and I'm glad that
we had an opportunity to talk about him today. I'm glad of you too,
at you too. Until next time, we'll talk to you