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Speaker 1: Hey all, we hope you enjoyed your Christmas. We know

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some of you are new here, so we figured we

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take a trip down memory lane.

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Speaker 2: Here's a deep dive replay that'll help you get to

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know us just a little bit better.

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Speaker 1: We hope you enjoy it. This topic that we're doing

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today is like years in the making. People have been

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asking about this particular subject for years and we've never

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done this, and so I think it's long overdue that

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we talk about this. We're going to be talking about

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your son Thomas, and we have questions. I know that

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you asked the questions you asked our insiders and locals, folks, Hey,

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what kind of questions do you have about my son Thomas?

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And they came up with some questions. Oh my god,

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so many, yeah, so many. So I think you narrow

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some of those down, try to encapsulate the questions that

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people had and try to narrow them down so we

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could get through some of them today. But I know that,

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like the I wanted to at least sort of kick

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it off with one of the first times or the

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first time that I met you. People can listen to

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our story and how we met, but the first time

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that I met you. It was during a job interview

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that turned into like, oh my god, did we just

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become best friends session? Yes, it was just like the

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serendipitous meeting. And one of the things that you talked

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about with me was Thomas. I don't think you remember that.

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I don't. I totally do not remember this. Yeah, it

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was and it wasn't like you went on and on

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and on about him. But you know, when I first

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met you, I just remember thinking, self, she's so happy,

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you know. And not that that's a bad thing, but

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when people are so have this such a happy, positive disposition,

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sometimes I can be a little leery, you know, because

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unless that person has gone through some stuff, I'm not

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real sure if that person and I are going to

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be some potigo, you know. And because I've gone through

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some stuff and you have gone through some stuff, and

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but the way that you handle it, and I think

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in that moment when you started talking to me about Thomas,

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I was like, wow, she just the way that you

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talked about him, and and in the very it was

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a very abbreviated way that you you talked about him.

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It's not like you went on and on, but just

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the abbreviated way that you talked about him, and you

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did it in such a positive way, and that just

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I don't know your disposition about him. I thought we're

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going to be really good friends, this chick and I

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because I just loved it, and I loved like your

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face lit up when you talked about him and there

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was just nothing negative about him or his disability or

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just anything. I just loved it. I just I'll never

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forget that day talking to you about all the things

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that we talked about and how we basically became best

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friends that day, But just the way that you talked

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about him, and I'll get emotional talking about it, but

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he's just a but it was just a It was

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really cool the way you talked about him, and how

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you've always has been very positive about him and positive

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about taking care of him, and it's never been like

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a burden or anything like that. Like I hate to

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even use that word, but it's always been a joy

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to have him. And I love that about you. I

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love that about both of you. I just love that

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about Thomas. Yeah, well, Annyway, it's a very special, special boy.

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Speaker 2: Yeah yeah, and there you know, I don't know why,

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I guess I don't know why we haven't spent time

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talking about him and his story in the past.

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Speaker 1: I don't know.

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Speaker 2: Maybe it's just because, like we've always been focused on

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politics and cultural things and not as much personal stuff.

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But now that we have these like two communities, like

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the local supporters and the insiders who you know there

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are like number one like primo fans, right, And so

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it's it makes sense that the more they get to

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know us personally, the more that they attend meet and greets,

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the more that they interact with us, there's curiosity about

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the more.

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Speaker 1: They want to knives, the more they want to know, right.

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Speaker 2: Yeah, And so I didn't really you know, if you

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would have said, let's just have a deep dive about

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Thomas and just say whatever it is that you want

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to say about him, I would have no clue where

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to start, because I have I've you know, I've been

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his mom for twenty seven years.

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Speaker 1: So to me, I.

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Speaker 2: Don't know what other people see and are curious about.

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And that's why I reached out to everybody to say,

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what are your questions? And there were definitely themes, like

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there were definite people had Like a lot of people

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have the same question right, So I figured, well, this

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is this is going to be pretty easy to make

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sure that people get their primary questions answered. And then

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there was just so many that I don't know that

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we'll get to all of them, but we'll, you know,

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we'll get to a lot.

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Speaker 1: And I think it's important for us to talk about

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that because you and I've been doing this for fifteen

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years now, and I think that just in the past week,

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you know, like you put up a birthday post that

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showed his picture, and there was some nastiness coming back

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in you. Just not a lot. I mean, there's just

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a touch, like maybe one couple, just a couple, little tiny,

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teeny tiny handful, because people will make assumptions. You know,

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jackasses out there will make assumptions about your life, my life.

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They'll just make assumptions about people that they think that

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they know because they see us every day, but they

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don't know, they don't know about your life. So I

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think that's another important reason to go, Okay, well you

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want to know, we'll answer some questions about Yeah.

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Speaker 2: I mean, I've always been in an open book about

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right about him, about everything really, and so it's not

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you know, it's not for shame you know, it's not

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we haven't not talked about him because we're like I'm

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like ashamed of him, or don't or I want to

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keep it in private or anything like that.

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Speaker 1: It's not about that at all.

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Speaker 2: It's just like there's so much news all the time

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that I always feel like, well, my life, that doesn't

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mean anything.

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Speaker 1: That's exactly I think we both feel that way. It's like,

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why are people why would they be interested in our lives?

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Our lives are completely boring. Yeah, right, as you know,

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I am a chronic insomniac. I have trouble sleeping a lot,

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and that's partly because of who I am, partly because

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of menopause. But this stuff, this healthy self stuff them

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sleep bomb you guys. I love it and it actually

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works because you know, other stuff that are taken in

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the past, it's like a pill or whatever. It takes

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a long time to digest this stuff. It gets right

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into your bloodstream. It absorbs one hundred and sixty seven

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percent faster than pills, and it's just awesome. It works,

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and when you're trying to sleep, you don't want to wait.

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You just want to go to sleep, you know what

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I mean, And stay asleep right, And this stuff has

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all the stuff in it. This is what healthy cell

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is so wonderful at doing, is they combine all the

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things that you into right into This is how many

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pills are in that packet packet of goo, which is yummy,

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yummy goo. I swear I could eat more than one,

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but I don't. I try to refrain. But anyways, it's

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great stuff. It actually works. They have a line of

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other stuff that they got, hair stuff, They've got you know,

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regular vitamins, but this stuff for sleep specifically is fantastic.

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So encourage everybody. And it's cherry flavored, cherry flavored.

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Speaker 2: All you need to do is go to healthy sell

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dot com slash chicks and when you use code chicks,

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you get.

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Speaker 1: Twenty off your first order. Try it, try or try

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one of their other products. Yeah. They're all amazing, all

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of them. Yeah.

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Speaker 2: So I think the primary question to answer right out

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of the gate is because some people are not aware

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of this, and I was surprised, And then I was like,

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why am I surprised? These people don't know all the

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ins and outs of my personal history, so why would

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it surprise me that some people are just now discovering

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that my husband Ron is not Thomas's biological dad.

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Speaker 1: Of course, they wouldn't know that.

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Speaker 2: Necessarily, and so I guess it makes most sense to

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tell the story with how Thomas came to be, And

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that starts with me getting married basically right out of

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high school to my high school sweetheart who joined the military.

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And the reason we got married so young is so

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that because he was in the Air Force and he

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got stationed in Okinawa, immediately I wanted to join him.

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I was madly in love with him, and I wanted

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to be with him, and so that was the simple

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way to do that, right, get married as an absolute child.

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When I think about the pain I caused my parents,

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oh my got so.

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Speaker 1: But anyway, Mack was a child bride. She was a

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child bride.

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Speaker 2: Seriously, Like, I turned eighteen and got married like three

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weeks later.

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Speaker 1: And it's crazy because it was like two weeks. And

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it's crazy now because you have an eighteen year old

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son and you're probably looking at that going, oh my god,

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can you imagine Jackson, Oh I'm married right now? Oh

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my gosh, there's no way, no right. Oh different back

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then anyway.

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Speaker 2: So anyway, so we were married for a good long

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while and at about I want to say, ten years

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into our marriage. We were we were married for almost

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eleven and ten about well about eight or nine years

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in that's when we started thinking because we were really

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really young and so but there was a moment where

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I decided I want to be a mom, like more

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than anything in the.

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Speaker 1: Whole wide world.

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Speaker 2: And unfortunately it wasn't easy, Like we had to go

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through a lot of infertility mumbo jumbo. Never got to

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the point of doing like in vitro or anything like that,

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but like did some artificial insemination and drugs and all

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that kind of stuff to boost our chances, and lo

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and behold, I became pregnant with twins, and so that

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I didn't know that until.

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Speaker 1: I lost one of them very very early on.

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Speaker 2: So I want to say I was I don't know,

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seven weeks into the pregnancy, and I was delighted to

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be pregnant, like you have no idea.

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Speaker 1: I was over the moon.

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Speaker 2: I was so so so happy, we both were, and

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super super excited to be pregnant. And then at thirteen

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weeks I started bleeding and was crushed. We went to

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the emergency room and I was told in the emergency

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room to prepare for the loss of Thomas, who was

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the remaining.

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Speaker 1: Child because I.

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Speaker 2: Bled early on, lost to twin early on, and actually

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Thomas got his name because it means twin. That's how

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I sort of landed on that name is because it

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means twin. And so at thirteen weeks, I had a

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placental abruption and that's why I started bleeding, and Thomas

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was a huge risk and so went to the emergency

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room was told here's a cup, you know, like try

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to catch what you can, but you're gonna lose this baby.

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And so when I went to go see my obgyn

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a couple days later, she did an ultrasound and he

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was fine, and so it was like this amazing miracle

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and it was super joyous and we were super excited.

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And I continued on with my pregnancy as a high

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risk person, and I had the worst pregnancy ever, Like

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it was I had the sciatica, like I was miserably uncomfortable,

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and then I developed at twenty eight weeks, I thought

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I was okay, but like at twenty eight weeks, I

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developed pre eclamsia, which I didn't know anything about at

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the time because when you're a new time pregnant person,

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you just assume everything's gonna go great because women have

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been having babies for billions of years and they are

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good at it. So I didn't look at all the

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scary stories. I thought, oh, that happens to other women.

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But everything was happening to me. So I'm just not

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a good pregnant person. And when I went to my

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twenty eight week checkup, and you know how they immediately

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take your blood pressure, she said, she took my blood pressure.

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Speaker 1: I don't know what it was.

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Speaker 2: It was sky high, and she immediately said, get on

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your left side. I'm calling an ambulance because I was

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at a doctor's office in a hospital that did not

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have nick you type of care. They were not equipped

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to deal with a premature delivery at that young at

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twenty eight weeks.

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Speaker 1: And I'm just like, what are you talking about?

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Speaker 2: I feel fine, Like this is crazy, and I joked

246
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all the way downtown in the ambulance ride. I was

247
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like making fun of everything. I was like, this is

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so stupid. There's got to be some mistake. This is crazy.

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What I didn't know is that I was very very

250
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very very very ill, and I didn't know how dangerous

251
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preclamsy it was. But long story short, the Saturdays. I

252
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was in the hospital for a few days during the week.

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Saturday that's when things got really really bad. And so

254
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on a Saturday, which I mentioned it was a Saturday

255
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because it was a teaching hospital and there were no

256
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staff physicians there on the Saturday, was all like residents

257
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and kids and learning people and not anybody that really wanted.

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Speaker 1: To take control of the situation.

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Speaker 2: So I had a monitor on that was monitoring Thomas's

260
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heartbeat after each contraction. I was in labor for I

261
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don't know, eight hours or so, and every single contraction

262
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his heart would decelerate. And I didn't know enough at

263
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the time to like demand an emergency sea section. I

264
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don't I'm twenty eight or whatever, twenty seven, I have

265
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no idea, and so I just went with it. They

266
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weren't making a huge fuss about it, so I wasn't either.

267
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And then finally a staff physician arrived for the night,

268
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took one look at all of the tapes that had

269
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been gathered throughout the day, and then immediately called it

270
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an emergency. I was wheeled in, got the sea section,

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he came out completely blue, and they did all the

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things to make him not blue anymore, but the fact

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remained that he had the cord around his neck and

274
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he lost oxygen for way too long of a time.

275
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And so what we found out I think about six

276
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days later, because to us, he looked perfect, right like,

277
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once they revived him, he looked perfect. He was just

278
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very small, he was three pounds and two ounces when

279
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he was born, but he looked physically fine, and so

280
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I was like, yay, I was still recovering and very

281
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very ill, and not even realizing that I was at

282
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death's door apparently because I just couldn't believe that because

283
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I felt okay. But we found out when they did

284
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a brain ultrasound that he was anything but okay. And

285
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so he ended up had like CP. When I say

286
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that he has CP, that stands for cerebral palsy for

287
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people who may not know that. And so what that

288
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does is it affects the motor area of your brain

289
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and there's varying levels of CP. You probably know someone

290
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with CP that walks around and talks and is fine. Unfortunately,

291
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Thomas's CP also came with something called PVL, which stands

292
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for periventricular luco Malaysia. I learned a lot in those

293
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early days, and that just meant that the white matter

294
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of his brain was also deeply impacted by injury and

295
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lack of oxygen. And so we were told that he

296
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wouldn't see, he wouldn't hear, he wouldn't I mean, he

297
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would essentially be a vegetable. And so that's how I

298
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went home, is knowing that, and I cried for days.

299
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I mean, I you know, you say and people say, oh,

300
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you're so happy and positive, but it's not that I

301
00:14:19,480 --> 00:14:21,000
didn't have a complete breakdown.

302
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Speaker 1: Like of course, I was a mess and absolute mess.

303
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Speaker 2: I probably slept and cried interchangeably NonStop for two or

304
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three days. And then I just you get to a

305
00:14:33,679 --> 00:14:36,919
point where you're like, Okay, well I can either continue

306
00:14:36,919 --> 00:14:41,399
to sleep and cry or I can just live with

307
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this and move forward. And I have a kid that

308
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I've got to take care of and I've got to

309
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figure out.

310
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Speaker 1: How to do that. And so, you know, he was

311
00:14:48,240 --> 00:14:49,480
a nick you for quite some time.

312
00:14:49,559 --> 00:14:52,159
Speaker 2: He came home, I want to say, like six or

313
00:14:52,200 --> 00:14:56,039
seven weeks later. The problem is is that when I

314
00:14:56,080 --> 00:14:59,720
emerged from my room to stop crying, and sleeping.

315
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Speaker 1: My husband at the time did.

316
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Speaker 2: Not, so there was I reached a point where I

317
00:15:05,559 --> 00:15:07,960
was like, Okay, I've got this, you know what I mean, Yeah,

318
00:15:08,039 --> 00:15:09,639
let's do this. We can do this, and we're going

319
00:15:09,720 --> 00:15:12,039
to love him all the same. But he just never

320
00:15:12,720 --> 00:15:15,879
got there and just handled it in a very very

321
00:15:15,919 --> 00:15:19,240
different way. And I will say just a side note

322
00:15:19,360 --> 00:15:22,320
that if you are a mom of a child with

323
00:15:22,399 --> 00:15:25,960
disabilities and you have never read the poem Welcome to Holland,

324
00:15:26,639 --> 00:15:30,320
I literally attribute that to saving me, like that poem

325
00:15:31,039 --> 00:15:33,360
saved my soul.

326
00:15:34,720 --> 00:15:37,159
Speaker 1: In essence. In essence, what's a synopsis of it?

327
00:15:37,360 --> 00:15:40,919
Speaker 2: So the synopsis is that when you're expecting a baby,

328
00:15:41,039 --> 00:15:43,679
you are planning a trip to Paris, for example, and

329
00:15:43,720 --> 00:15:47,200
you have all these dreams and hopes about how amazing

330
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Paris is going to be, and you're going to see

331
00:15:48,799 --> 00:15:51,120
the Eiffel Tower and you're gonna do all these incredible

332
00:15:51,120 --> 00:15:53,360
things and see the best of Paris. And then you

333
00:15:53,399 --> 00:15:56,200
step off the plane and you realize there's been a mistake.

334
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You've landed in Holland. And so it's a different, different

335
00:16:00,720 --> 00:16:04,440
kind of journey. It's a different kind of trip, but

336
00:16:04,799 --> 00:16:07,080
it still has so much beauty if you just allow

337
00:16:07,120 --> 00:16:10,279
yourself to see it. And it was that perspective that

338
00:16:10,320 --> 00:16:13,159
I was like, oh my gosh, that it just it

339
00:16:13,399 --> 00:16:17,480
just completely shifted my entire thinking about, you know, getting

340
00:16:17,519 --> 00:16:20,240
out of that woe is Me mentality and just jumping

341
00:16:20,279 --> 00:16:23,279
in into being a mom of a special needs boy

342
00:16:23,399 --> 00:16:26,840
like that poem changed my life, literally changed my life.

343
00:16:26,840 --> 00:16:32,360
Speaker 1: Tulips. There are tulips. There, you go, there's tulips. Beautiful,

344
00:16:32,440 --> 00:16:34,159
beautiful tulips. Yeah, that's right.

345
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Speaker 2: So that saved me, but unfortunately it did not have

346
00:16:36,759 --> 00:16:39,279
any impact on my ex and so we you know,

347
00:16:39,360 --> 00:16:42,360
we did the best we could. I you know, I

348
00:16:42,440 --> 00:16:44,399
tried to give him grace, but then he became such

349
00:16:44,440 --> 00:16:47,279
an asshole later that it's hard to maintain grace.

350
00:16:47,320 --> 00:16:49,200
Speaker 1: And I know you have a lot to say about that. Yes,

351
00:16:50,080 --> 00:16:51,480
at some point you just say, you know what, I

352
00:16:51,519 --> 00:16:54,440
can do this on my own right, and I cannot.

353
00:16:54,720 --> 00:16:58,399
I'm parenting this kid that has CP and I don't

354
00:16:58,440 --> 00:17:00,480
have time to deal with your craps. So I'm going

355
00:17:00,559 --> 00:17:03,799
to go ahead and just let you go. Yeah.

356
00:17:04,039 --> 00:17:07,480
Speaker 2: So, I you know, I tried everything I could to

357
00:17:07,559 --> 00:17:09,880
break him out of his shell and be in this

358
00:17:10,000 --> 00:17:15,200
with me for a solid year and by the end

359
00:17:15,279 --> 00:17:17,319
of nineteen ninety seven, which is the year because my

360
00:17:17,680 --> 00:17:21,119
Thomas was born in January, and by around December, it

361
00:17:21,240 --> 00:17:23,559
was just untenable. He was never you know, I don't

362
00:17:23,599 --> 00:17:25,839
want to make I want to make clear he was

363
00:17:25,880 --> 00:17:27,799
not abusive to me or anything like that, but he

364
00:17:27,880 --> 00:17:32,440
was mean. He was cold and distant and not supportive

365
00:17:32,559 --> 00:17:33,640
and just not in.

366
00:17:33,559 --> 00:17:36,680
Speaker 1: It with me. And so which can be just as bad.

367
00:17:36,920 --> 00:17:39,119
Which is bad. Yeah, it can be just as bad

368
00:17:39,160 --> 00:17:42,119
as somebody. I mean, seriously, it can be. Yeah.

369
00:17:42,119 --> 00:17:43,880
Speaker 2: And it got to the point I think he was

370
00:17:43,960 --> 00:17:46,799
doing it on purpose, like he was being mean on

371
00:17:46,960 --> 00:17:49,920
purpose so that I would be the one to end

372
00:17:50,079 --> 00:17:52,799
the marriage, right, And that was a very cowardly thing

373
00:17:52,960 --> 00:17:57,160
on his part, But ultimately it worked because I couldn't

374
00:17:57,160 --> 00:17:59,599
take it anymore. And so I was just like, you

375
00:17:59,640 --> 00:18:01,680
have got to go, like you have to leave, and

376
00:18:02,319 --> 00:18:04,799
I'll just do this on my own. And for a while,

377
00:18:04,839 --> 00:18:07,079
you know, I thought, well, maybe we can go to counseling.

378
00:18:07,119 --> 00:18:09,519
We went to one counseling session and I was like,

379
00:18:09,599 --> 00:18:12,680
this is this is utterly pointless, Like this is just

380
00:18:12,880 --> 00:18:16,079
it's just not going to work. And so he left

381
00:18:16,319 --> 00:18:19,559
and there was a long period of time that he

382
00:18:19,720 --> 00:18:24,519
sort of kind of pretended to be engaged. He would

383
00:18:24,559 --> 00:18:27,000
send a little money here and there, he never at

384
00:18:27,039 --> 00:18:29,720
any time paid the amount of child support that he

385
00:18:29,799 --> 00:18:33,279
was supposed to, and I didn't want to deal with

386
00:18:33,599 --> 00:18:36,160
courts and all of that, and so I was just like,

387
00:18:36,240 --> 00:18:38,319
at some point it just got to be I got

388
00:18:38,400 --> 00:18:41,519
tired of asking for help, and I finally just said,

389
00:18:42,279 --> 00:18:44,680
just you know what, just pretend you never had a son,

390
00:18:45,039 --> 00:18:47,480
and I'll I've got this on my own now. And

391
00:18:47,519 --> 00:18:49,880
then we didn't speak for like three years. He is

392
00:18:50,599 --> 00:18:53,559
he continues to not be involved nor his family. I

393
00:18:53,559 --> 00:18:57,839
don't hear from anybody and his family ever. But he

394
00:18:57,960 --> 00:19:02,359
has apologized at least three or four times now in

395
00:19:02,400 --> 00:19:07,160
these very genuine and sincere, I believe messages to me

396
00:19:07,240 --> 00:19:11,279
where he has said very very like complimentary and glowing

397
00:19:11,359 --> 00:19:15,599
things about how I handled Thomas and had what a

398
00:19:15,640 --> 00:19:18,079
good mom, right, what a good mom I've been. How

399
00:19:18,079 --> 00:19:21,839
he feels tremendous guilt about his lack of ability.

400
00:19:21,400 --> 00:19:25,680
Speaker 1: To do the same thing he also should. So, I mean,

401
00:19:25,759 --> 00:19:28,359
I'm glad, I don't you know, I don't.

402
00:19:28,759 --> 00:19:32,039
Speaker 2: I don't care enough about him to worry about his feelings,

403
00:19:32,079 --> 00:19:34,200
and so a lot of times when he has said that,

404
00:19:34,319 --> 00:19:36,960
I'll just be like, you know, thanks, but I'm if

405
00:19:36,960 --> 00:19:41,920
you're asking me to forgive you or give you a pass, uh.

406
00:19:41,640 --> 00:19:45,440
Speaker 1: Yeah, between to do that. That's between you and your maker, dude, right,

407
00:19:45,480 --> 00:19:47,680
I'm sorry, because like you and I we've been friends

408
00:19:47,680 --> 00:19:48,960
for a long time. I just don't have a lot

409
00:19:49,000 --> 00:19:51,319
of talk. I don't have any tolerance for people who

410
00:19:51,400 --> 00:19:54,440
abandoned their children. That's yeah, that and a lot of

411
00:19:54,480 --> 00:19:56,079
that has to do with my own hang ups and

412
00:19:56,200 --> 00:19:58,640
my own background, but I just don't have tolerance for that.

413
00:19:58,720 --> 00:20:02,039
You abandon your kid and you're muck, so yeah, yeah,

414
00:20:02,079 --> 00:20:05,519
and you abandon He abandoned you too, Yeah, abandoned. Not

415
00:20:05,559 --> 00:20:07,480
only did he abandon his kid, but he abandoned you

416
00:20:07,519 --> 00:20:10,000
at a time where you really needed that help. So

417
00:20:10,359 --> 00:20:11,880
I just don't have a lot of tolerance for that.

418
00:20:11,920 --> 00:20:14,039
He can ask for forgiveness or whatever, but he needs

419
00:20:14,039 --> 00:20:15,640
to take that up with his maker. Sorry.

420
00:20:15,799 --> 00:20:18,960
Speaker 2: Yeah, well, and I get maybe the reason that I

421
00:20:19,079 --> 00:20:22,759
do that I don't have like a huge bunch of

422
00:20:22,920 --> 00:20:26,960
what's the word like animosity towards him now is because

423
00:20:27,680 --> 00:20:31,599
I believe that all of that led to where I

424
00:20:31,640 --> 00:20:34,000
am now like it led to me finding Ron, it

425
00:20:34,079 --> 00:20:36,279
led to me having Jackson, and so I can't be

426
00:20:36,359 --> 00:20:39,640
mad about that, right because like, man, what a different

427
00:20:39,920 --> 00:20:40,880
world it is? Now?

428
00:20:41,279 --> 00:20:42,319
Speaker 1: What a different marriage?

429
00:20:42,440 --> 00:20:45,000
Speaker 2: I mean, I thought my marriage to him was okay,

430
00:20:45,519 --> 00:20:49,480
but now I realize what how just mediocre and average

431
00:20:49,480 --> 00:20:52,000
and not really all that special it was? Because now

432
00:20:52,039 --> 00:20:54,200
I have what I'm supposed to have and it's a

433
00:20:54,279 --> 00:20:57,359
huge difference. And I mean that's yeah, I mean that's

434
00:20:57,359 --> 00:20:59,200
a whole So I can't I can't really hold a

435
00:20:59,240 --> 00:21:03,400
lot of hostility towards him because of how good life

436
00:21:03,480 --> 00:21:03,880
is today.

437
00:21:03,920 --> 00:21:06,680
Speaker 1: Okay, so then speak So then speaking of that, so

438
00:21:06,960 --> 00:21:10,240
you get so he gets, he moves out. So you're

439
00:21:10,240 --> 00:21:12,519
with Thomas and you're by yourself and you obviously I'm

440
00:21:12,559 --> 00:21:15,160
assuming your parents were around to help out a little bit, right,

441
00:21:15,200 --> 00:21:15,480
So you.

442
00:21:15,440 --> 00:21:18,880
Speaker 2: Had my parentid Actually my ex's sister was still very

443
00:21:18,960 --> 00:21:21,319
much engaged and helping me while I worked.

444
00:21:21,359 --> 00:21:23,599
Speaker 1: She was taking care of him. And say, at that

445
00:21:23,640 --> 00:21:25,559
full time she was still there. Yeah, you were still

446
00:21:25,640 --> 00:21:27,799
you were working. You've always worked full time, so you

447
00:21:27,799 --> 00:21:31,079
were working, you had some help. And then like, okay,

448
00:21:31,119 --> 00:21:34,240
so then how long was it before you met Ron.

449
00:21:34,799 --> 00:21:37,200
Speaker 2: Well, that's an interesting thing because as when Mike left,

450
00:21:37,240 --> 00:21:38,880
and of course I was devastated about the end of

451
00:21:38,880 --> 00:21:41,519
my marriage, and I was convinced at the tender age

452
00:21:41,519 --> 00:21:43,839
of whatever I was, twenty eight or twenty nine, I

453
00:21:44,000 --> 00:21:47,000
was sure that having and you know, and it is

454
00:21:47,160 --> 00:21:51,119
it's a it's an ugly word, but having the burden

455
00:21:51,720 --> 00:21:55,880
of a child with such extraordinary special needs, I genuinely

456
00:21:55,880 --> 00:21:58,839
believed I would never even have another kiss from a

457
00:21:59,000 --> 00:22:00,880
from a man as long as I lived. Like I

458
00:22:00,920 --> 00:22:03,559
was like, there's no way anybody's gonna want anything to

459
00:22:03,559 --> 00:22:05,720
do with me after this. This is like I would

460
00:22:05,720 --> 00:22:07,720
never This is like a burden I can't expect anybody

461
00:22:07,720 --> 00:22:08,319
else to shoulder.

462
00:22:08,640 --> 00:22:09,839
Speaker 1: And so I was convinced of it.

463
00:22:10,160 --> 00:22:13,519
Speaker 2: I went and saw a therapist who completely set me straight,

464
00:22:13,559 --> 00:22:14,680
and she was fantastic.

465
00:22:14,720 --> 00:22:15,400
Speaker 1: I'll never forget her.

466
00:22:15,440 --> 00:22:18,240
Speaker 2: I only saw her once, but her name was Reagan,

467
00:22:18,440 --> 00:22:22,920
and she said, you are so arrogant to have that attitude.

468
00:22:23,039 --> 00:22:25,200
How dare you think that you're the only one that

469
00:22:25,200 --> 00:22:28,759
can love your son? And I was like, oh damn.

470
00:22:29,039 --> 00:22:31,880
I was like, yeah, slap in the face of reality.

471
00:22:32,240 --> 00:22:34,240
But it was what I needed, and I went home

472
00:22:34,319 --> 00:22:36,799
after that session with her, and I was just like,

473
00:22:37,759 --> 00:22:39,559
I am this is I'm gonna be fine.

474
00:22:39,640 --> 00:22:40,480
Speaker 1: I'm gonna be fine.

475
00:22:40,920 --> 00:22:43,480
Speaker 2: And I went out to like, I went out with

476
00:22:43,519 --> 00:22:45,839
my friends to the bars, and I thought, you know,

477
00:22:45,839 --> 00:22:47,119
I'm young, I'm gonna party it up.

478
00:22:47,119 --> 00:22:47,960
Speaker 1: I'm gonna find somebody.

479
00:22:48,119 --> 00:22:50,119
Speaker 2: And like, I found some young guy who was like

480
00:22:50,119 --> 00:22:52,119
twenty one at the time, and like, I had make

481
00:22:52,160 --> 00:22:54,799
out sessions with him for a few weeks, and I

482
00:22:54,880 --> 00:22:56,200
was just like, you know, living my.

483
00:22:56,200 --> 00:22:57,720
Speaker 1: Best life right right.

484
00:22:57,799 --> 00:23:02,319
Speaker 2: And then I was set up with who worked with

485
00:23:02,359 --> 00:23:05,240
a guy whose wife I worked with, and they set

486
00:23:05,319 --> 00:23:08,839
us up and we met at a Memorial Day barbecue

487
00:23:08,839 --> 00:23:10,599
at their lake house that same May.

488
00:23:10,720 --> 00:23:11,759
Speaker 1: So Mike left in.

489
00:23:12,160 --> 00:23:16,920
Speaker 2: January, and in May, five months later, yeah, five months later,

490
00:23:17,359 --> 00:23:20,200
I met Ron. And then a few weeks after we met,

491
00:23:20,279 --> 00:23:22,440
he called. He lived in Columbus, Ohio at the time,

492
00:23:22,440 --> 00:23:24,680
but he called and came to Indy and wanted to

493
00:23:24,839 --> 00:23:26,880
have a lunch date. So we did that, and then

494
00:23:26,920 --> 00:23:28,759
he had a headache. I'll never forget this, because he

495
00:23:28,799 --> 00:23:31,039
had a really bad headache. Came to my house after

496
00:23:31,119 --> 00:23:34,759
lunch and fell asleep on my couch and I remember

497
00:23:34,880 --> 00:23:38,119
sitting there like this, looking at him and saying to

498
00:23:38,160 --> 00:23:43,400
myself that day, I'm going to marry that guy. And

499
00:23:43,440 --> 00:23:43,759
I did.

500
00:23:44,039 --> 00:23:46,079
Speaker 1: So I love it. I love it so much.

501
00:23:46,400 --> 00:23:48,720
Speaker 2: And then he met Thomas that day, but he knew

502
00:23:48,759 --> 00:23:51,240
about him immediately. And it was so funny because so

503
00:23:51,279 --> 00:23:53,759
many people said, don't tell him, like, I know you're

504
00:23:53,799 --> 00:23:56,440
excited about this date. Do not tell him about Thomas.

505
00:23:56,480 --> 00:23:59,319
That's going to completely overwhelm him. Send him packing.

506
00:23:59,359 --> 00:24:01,240
Speaker 1: Oh yeah. I had so much advice.

507
00:24:01,039 --> 00:24:03,480
Speaker 2: From my parents too, who were like, just you know,

508
00:24:04,160 --> 00:24:05,960
that's not something that you say to somebody on a

509
00:24:06,000 --> 00:24:06,519
first date.

510
00:24:06,799 --> 00:24:09,359
Speaker 1: And I was I thought to myself, Yeah, that's probably right.

511
00:24:09,400 --> 00:24:12,240
I mean this, it's so funny. Beca I knew Ron,

512
00:24:12,480 --> 00:24:15,079
I grew up with Ron, Yeah, I wouldn't have And

513
00:24:15,160 --> 00:24:17,039
if I would have known you, which I didn't know

514
00:24:17,079 --> 00:24:18,920
you until later on in life, but if I would

515
00:24:18,960 --> 00:24:21,920
have known you and I would have known you were

516
00:24:21,920 --> 00:24:23,599
going on a date with Ron, I wouldn't have said that.

517
00:24:23,799 --> 00:24:25,279
I wouldn't have said that. I would have been like,

518
00:24:25,319 --> 00:24:27,519
tell him, he's totally cool. He would he'll love him,

519
00:24:27,519 --> 00:24:32,440
He'll love Thomas. He'll I won't scare him, it won't. Yeah,

520
00:24:32,440 --> 00:24:34,440
I don't it wouldn't have scared I don't. I mean,

521
00:24:34,519 --> 00:24:37,240
just knowing who he is as a person, I just yeah,

522
00:24:37,279 --> 00:24:38,880
I wouldn't have I wouldn't have said that. I would

523
00:24:38,920 --> 00:24:40,279
have been like, it's not going to scare him, it's

524
00:24:40,279 --> 00:24:42,279
not going to freak him out. It's going to be fine.

525
00:24:42,400 --> 00:24:45,039
Speaker 2: And I told him at lunch, like on our first date,

526
00:24:46,160 --> 00:24:50,400
I said, so listen, I you know, I can't I

527
00:24:50,440 --> 00:24:52,359
don't know how to say this except to just say it,

528
00:24:52,440 --> 00:24:55,400
but you need to know that I have a son

529
00:24:55,880 --> 00:24:58,119
and he's kind of a mess, like he's got a

530
00:24:58,160 --> 00:25:02,000
lot of disabilities, and I just felt like I needed

531
00:25:02,039 --> 00:25:04,920
to say that to you upfront in case that that's

532
00:25:04,960 --> 00:25:07,759
a problem. And he goes, why would that be a problem,

533
00:25:08,039 --> 00:25:10,359
and I was like, well, it was a problem for

534
00:25:10,440 --> 00:25:15,119
his dad, So that's why I just wanted to make

535
00:25:15,160 --> 00:25:17,920
sure that I just say it out loud and upfront.

536
00:25:17,960 --> 00:25:20,119
And he was like, well, your ex sounds like a

537
00:25:20,200 --> 00:25:21,960
huge prick. Those were his words, and I was like,

538
00:25:22,039 --> 00:25:23,599
I'm totally going to marry this guy, so.

539
00:25:25,960 --> 00:25:26,240
Speaker 1: I know.

540
00:25:26,400 --> 00:25:30,559
Speaker 2: I mean, he's and he's been amazing obviously this entire time.

541
00:25:31,200 --> 00:25:34,519
So okay, So that gets I think that answers like

542
00:25:34,559 --> 00:25:37,119
the whole How did this? How did how did we

543
00:25:37,160 --> 00:25:37,960
get to where we are? So?

544
00:25:38,000 --> 00:25:40,559
Speaker 1: Then how quick was it until you got married? So

545
00:25:40,599 --> 00:25:42,559
we got married, we got engaged.

546
00:25:42,559 --> 00:25:46,680
Speaker 2: So we started dating in June of nineteen ninety eight,

547
00:25:46,839 --> 00:25:50,480
and we got engaged Valentine's Day of nineteen ninety nine.

548
00:25:50,279 --> 00:25:53,079
Speaker 1: And got married in November of two thousand. I love

549
00:25:53,160 --> 00:25:59,160
that so And then then Jackson was born five right.

550
00:25:59,359 --> 00:26:02,480
Speaker 2: Yeah, into our marriage, and I people that was one

551
00:26:02,480 --> 00:26:04,599
of the questions people asked, is were you scared to

552
00:26:04,599 --> 00:26:05,279
have another kid?

553
00:26:05,920 --> 00:26:07,519
Speaker 1: So scared you guys?

554
00:26:07,680 --> 00:26:10,720
Speaker 2: And so convinced that I couldn't because of the problems

555
00:26:10,759 --> 00:26:13,000
I had before that, we went and saw like what

556
00:26:13,000 --> 00:26:16,440
do they call those period natologists and like all kinds

557
00:26:16,480 --> 00:26:21,119
of you know, super like high risk pregnancy people for consultations,

558
00:26:21,240 --> 00:26:24,279
and we were told that there were some scientific studies

559
00:26:24,279 --> 00:26:27,039
that seemed to suggest that a different father could make

560
00:26:27,079 --> 00:26:28,160
a difference.

561
00:26:28,160 --> 00:26:29,920
Speaker 1: In your pregnancy.

562
00:26:30,319 --> 00:26:32,319
Speaker 2: And so I held on to that with some hope,

563
00:26:32,359 --> 00:26:35,440
thinking okay, well, maybe it'll be easier this time around,

564
00:26:36,000 --> 00:26:37,799
And unfortunately it was not.

565
00:26:38,480 --> 00:26:40,240
Speaker 1: So it was a disaster.

566
00:26:40,440 --> 00:26:42,920
Speaker 2: I once again had a disastrous pregnancy and in fact

567
00:26:42,920 --> 00:26:46,480
delivered Jackson two weeks earlier, earlier than I did Thomas,

568
00:26:47,119 --> 00:26:49,319
so he was two pounds and five ounces, and he

569
00:26:49,400 --> 00:26:53,119
also had the same brain ultrasound which also showed bleeds

570
00:26:53,480 --> 00:26:56,319
in his brain. And I remember getting that news and

571
00:26:56,480 --> 00:26:58,920
really feeling like I could not handle it, Like I

572
00:26:59,039 --> 00:27:01,720
thought I was going to have a nervous breakdown, and

573
00:27:02,279 --> 00:27:06,039
but Ron held everything together and he was like, it

574
00:27:06,039 --> 00:27:09,160
doesn't matter what happens, We're gonna do this and it's

575
00:27:09,160 --> 00:27:12,680
gonna be okay. And we've got this and somehow, by

576
00:27:12,759 --> 00:27:16,640
some miracle and a lot of prayer, Jackson is a

577
00:27:16,720 --> 00:27:21,920
completely healthy, perfect, strong, amazing, perfect human.

578
00:27:22,319 --> 00:27:23,680
Speaker 1: I think it's just incredible.

579
00:27:24,200 --> 00:27:27,160
Speaker 2: So, yes, I was scared to have another and but

580
00:27:27,200 --> 00:27:30,920
I'm super glad I did. Obviously, Ron got snipped shortly

581
00:27:30,960 --> 00:27:33,359
thereafter because I was like, I can't do this again.

582
00:27:33,400 --> 00:27:35,720
I will die. And that's actually what the doctors said.

583
00:27:35,720 --> 00:27:38,559
They were like, you can't no more. Like no, Mas,

584
00:27:38,599 --> 00:27:40,799
you are done being pregnant. That's right, that's it for you.

585
00:27:41,599 --> 00:27:44,559
So one of the other big questions was what are

586
00:27:44,640 --> 00:27:47,720
the extent of Thomas's disabilities and like, you know.

587
00:27:47,799 --> 00:27:50,000
Speaker 1: What is he like, what does he know? How does

588
00:27:50,000 --> 00:27:50,680
he communicate?

589
00:27:51,680 --> 00:27:53,440
Speaker 2: I would say it's very hard to answer that question.

590
00:27:53,519 --> 00:27:55,720
Like people will say, like, what age would you put

591
00:27:55,799 --> 00:27:59,480
him at? Mentally, It's impossible to answer that question because

592
00:28:00,359 --> 00:28:04,160
I don't know. Like physically, he is one hundred percent

593
00:28:04,279 --> 00:28:07,599
a quadriplegic. He has no functional use of his arms

594
00:28:07,599 --> 00:28:10,519
and legs. He's very tight and stiff due to the

595
00:28:10,559 --> 00:28:15,720
CP he is he suffered, you know, obviously mental deficiencies

596
00:28:15,759 --> 00:28:20,319
as well. He's completely mentally retarded. I have no problem

597
00:28:20,440 --> 00:28:24,559
using that word, and it's the truth. I would say

598
00:28:25,039 --> 00:28:28,559
he has the I guess the intelligence level of a

599
00:28:28,640 --> 00:28:31,359
two or three month old. I'm not sure, except that

600
00:28:32,119 --> 00:28:35,759
I know he recognizes certain words and people and music,

601
00:28:36,359 --> 00:28:38,799
and he's very, very joyful.

602
00:28:39,000 --> 00:28:42,319
Speaker 1: So you know, it's hard to like put a age

603
00:28:42,519 --> 00:28:42,839
on that.

604
00:28:43,200 --> 00:28:46,079
Speaker 2: I don't know how to how to really say that,

605
00:28:47,559 --> 00:28:50,960
but he's he requires complete and total care, which we

606
00:28:51,000 --> 00:28:54,839
obviously gave him, gave him for twenty four straight years

607
00:28:55,039 --> 00:28:59,480
until it became too untenable on us physically, and so

608
00:28:59,680 --> 00:29:02,039
I know, you know, this is the whole fight I

609
00:29:02,079 --> 00:29:05,920
had on Instagram as this woman judged me for putting

610
00:29:06,000 --> 00:29:09,839
him into a twenty four hour care home with two

611
00:29:09,920 --> 00:29:13,920
lovely roommates at the time and it was a heartbreaking decision.

612
00:29:13,960 --> 00:29:15,759
Speaker 1: I can't. I mean there's no two ways around that.

613
00:29:15,880 --> 00:29:20,160
Speaker 2: Like, it was devastating but also super necessary for us

614
00:29:20,200 --> 00:29:24,960
to be a normal family for Jackson because we could

615
00:29:25,039 --> 00:29:28,319
never go anywhere together. We either had Thomas in a

616
00:29:28,319 --> 00:29:32,839
wheelchair van that had one seat, or we had the

617
00:29:32,880 --> 00:29:35,400
three of us and Thomas was being babysat by someone. Like.

618
00:29:35,400 --> 00:29:37,519
We could never do anything as a full family, right,

619
00:29:37,920 --> 00:29:41,799
and it was starting to affect our ability to give

620
00:29:41,920 --> 00:29:43,880
Jackson the life that he deserved.

621
00:29:44,359 --> 00:29:47,240
Speaker 1: And we were breaking apart physically. I mean, I meanything

622
00:29:47,359 --> 00:29:49,119
used to have a bad back. Yeah, I don't think

623
00:29:49,119 --> 00:29:52,519
that people understand, like it's because these he grew up,

624
00:29:52,920 --> 00:29:55,440
he got bigger, he got bigger, and like as you

625
00:29:55,519 --> 00:29:58,359
I remember you know because I met you fifteen years ago,

626
00:29:58,519 --> 00:30:02,000
he was smaller because he was younger, and as he

627
00:30:02,079 --> 00:30:05,359
got bigger, he got older, he got bigger. You had

628
00:30:05,400 --> 00:30:07,519
to pick him up and to take care of him.

629
00:30:07,519 --> 00:30:09,759
I mean, I think people forget that. They think that

630
00:30:09,799 --> 00:30:13,359
he's a child. He's twenty seven years old. Now he's

631
00:30:13,359 --> 00:30:15,519
twenty seven, so imagine pick I mean, granted he's not

632
00:30:15,559 --> 00:30:19,680
as big physically as a as a I think I

633
00:30:19,720 --> 00:30:22,079
don't want to say regular as a as your can

634
00:30:22,559 --> 00:30:25,119
as an every day like as as say as my

635
00:30:25,240 --> 00:30:27,599
twenty seven year old son. Right, he's not as big

636
00:30:27,640 --> 00:30:30,440
as Chase, right, And Chase is thirty now, he's not

637
00:30:30,480 --> 00:30:32,599
as big as what Chase was when he was twenty seven.

638
00:30:33,559 --> 00:30:36,759
And but I mean, but he's still a twenty seven

639
00:30:36,839 --> 00:30:40,799
year old man, right, And so I think people don't

640
00:30:41,039 --> 00:30:43,079
they don't compute that in their brains because they're not

641
00:30:43,119 --> 00:30:46,880
living your life. And so it's very easy to judge

642
00:30:47,000 --> 00:30:49,920
when you're a sideline player. You're out here and you're

643
00:30:49,920 --> 00:30:53,279
not living your life. And man, that pisses me off.

644
00:30:53,319 --> 00:30:55,480
And people do that to you, oh my god, because

645
00:30:55,480 --> 00:30:57,880
they've not met to they don't do it. They've not

646
00:30:57,960 --> 00:31:00,000
lived your day to day life. They're not they're twenty

647
00:31:00,119 --> 00:31:02,839
four to seven doing this, you know. And a lot

648
00:31:02,839 --> 00:31:04,759
of people that do it to you are the people

649
00:31:04,799 --> 00:31:11,599
that don't have the children. If they are mothers of

650
00:31:11,880 --> 00:31:17,279
kids who are special needs, they're not mothers of your kid, right.

651
00:31:17,720 --> 00:31:21,240
And then everybody's so different, right, everybody's different, And how

652
00:31:21,319 --> 00:31:25,559
dare they pass judgment on you when they also have

653
00:31:25,920 --> 00:31:27,960
a child whose special needs? And like you think that

654
00:31:28,039 --> 00:31:31,039
they of all people, wouldn't past judgment. Yeah, I don't.

655
00:31:31,119 --> 00:31:34,200
I don't get that. I know it was stunner.

656
00:31:34,319 --> 00:31:36,720
Speaker 2: I mean, especially because it was coming from a mom

657
00:31:36,839 --> 00:31:40,880
of a boy with CP who's one year older than Thomas,

658
00:31:41,200 --> 00:31:43,119
and so I was just like, how can you? I mean,

659
00:31:43,119 --> 00:31:45,759
that's great that you're able to keep him at home.

660
00:31:46,039 --> 00:31:47,759
It looks like he can sit up and hold a

661
00:31:47,799 --> 00:31:51,000
phone and hug you. Those are all things that Thomas

662
00:31:51,000 --> 00:31:55,079
will never ever do. And so step off, lady.

663
00:31:55,680 --> 00:32:00,680
Speaker 1: Yeah. And also and also how wonderful is that for you? Yeah? Exactly.

664
00:32:02,279 --> 00:32:04,319
Speaker 2: I should take a moment too to point out that

665
00:32:04,440 --> 00:32:08,720
I had extraordinary help. I mean, my parents were I

666
00:32:08,720 --> 00:32:10,319
don't know what I would have done without my mom.

667
00:32:10,640 --> 00:32:13,720
I mean she gave me and Ron so much time

668
00:32:13,920 --> 00:32:16,880
to learn to know each other and date, like even

669
00:32:16,880 --> 00:32:19,599
as we were married, right, she gave us date nights,

670
00:32:19,680 --> 00:32:22,799
She gave us trips that we were able to take

671
00:32:22,880 --> 00:32:24,759
because she would take Thomas while we traveled.

672
00:32:24,799 --> 00:32:25,920
Speaker 1: I mean, she was amazing.

673
00:32:26,240 --> 00:32:30,400
Speaker 2: And then we also had many many caregivers taking care

674
00:32:30,440 --> 00:32:32,799
of Thomas through his early years, and then for twenty

675
00:32:32,880 --> 00:32:36,480
years we had the same amazing caregiver. Shout out to

676
00:32:36,559 --> 00:32:40,839
Jamie who I mean also just a complete godsend and

677
00:32:40,880 --> 00:32:44,720
continues to be Thomas's very very best friend. So had

678
00:32:44,799 --> 00:32:46,359
I mean, without that help, I don't know what I

679
00:32:46,400 --> 00:32:48,839
would have done. So, you know, it has to be

680
00:32:48,920 --> 00:32:51,119
stated that, like, I could not do this alone.

681
00:32:51,160 --> 00:32:53,720
Speaker 1: I don't think anybody could. And so I was very

682
00:32:53,799 --> 00:32:54,559
very lucky.

683
00:32:54,319 --> 00:32:57,759
Speaker 2: To have like an amazing, amazing support system in place,

684
00:32:57,839 --> 00:33:02,279
for sure. But yeah, that decision to move was excruciating. Thankfully,

685
00:33:02,400 --> 00:33:05,079
he's fifteen minutes away. His house right now is fifteen

686
00:33:05,079 --> 00:33:08,319
minutes away, and you know, so we're able to see

687
00:33:08,400 --> 00:33:10,720
him whenever we want, which is great. We also have

688
00:33:10,880 --> 00:33:14,319
the trust in his care team, which has been phenomenal.

689
00:33:14,400 --> 00:33:17,440
And I found the home for him through stroke of

690
00:33:17,559 --> 00:33:22,039
luck by meeting this amazing woman who owns an agency

691
00:33:22,079 --> 00:33:25,720
that provides the caregivers, and she and I had breakfast

692
00:33:25,759 --> 00:33:28,920
one day, and I just she was so amazing and

693
00:33:29,000 --> 00:33:32,400
just such a wonderful, wonderful woman. I had every faith

694
00:33:32,400 --> 00:33:35,720
in her to put him in the best possible care

695
00:33:35,799 --> 00:33:38,279
and she has and I've been really really happy with it.

696
00:33:38,359 --> 00:33:40,720
The other question people have, naturally, is what's going to

697
00:33:40,759 --> 00:33:44,440
happen when you move South Carolina? Yeah, and that same

698
00:33:44,480 --> 00:33:47,359
woman who was so mean to me on Instagram. It

699
00:33:47,480 --> 00:33:49,759
was that same judgment in her tone. I know a

700
00:33:49,759 --> 00:33:52,440
lot of our people are insiders and supporters. They genuinely

701
00:33:52,440 --> 00:33:54,640
want to know because they're curious and they don't mean

702
00:33:54,680 --> 00:33:58,960
anything malicious by it. But there's a lot that goes

703
00:33:58,960 --> 00:34:01,680
into the fact that he's not coming with us. He's

704
00:34:01,720 --> 00:34:03,880
going to stay in his house where he's very well

705
00:34:03,920 --> 00:34:06,160
cared for, and we'll be coming back to Indy at

706
00:34:06,200 --> 00:34:08,920
least four times a year to see him. And granted

707
00:34:08,960 --> 00:34:11,360
that's not the same as him being fifteen minutes away,

708
00:34:11,800 --> 00:34:16,800
but it doesn't change his care at all. And unfortunately,

709
00:34:16,800 --> 00:34:19,079
he would not be able to get the same care

710
00:34:19,239 --> 00:34:22,320
in South Carolina. So Indiana is actually one of the

711
00:34:22,400 --> 00:34:25,719
very very best states in the nation in terms of

712
00:34:25,760 --> 00:34:30,639
the benefits that they provide for people like Thomas. The

713
00:34:31,280 --> 00:34:34,559
services that he receives, the care that he receives, the

714
00:34:34,599 --> 00:34:37,400
house that he is a part of, all of that

715
00:34:37,760 --> 00:34:41,000
would not be possible in South Carolina. And even if

716
00:34:41,000 --> 00:34:44,400
it was the same, South Carolina requires that he would

717
00:34:44,400 --> 00:34:46,320
be a resident for a certain i think for a

718
00:34:46,400 --> 00:34:49,119
year before he'd be eligible to be put on a

719
00:34:49,159 --> 00:34:53,159
waiting list for those services, none of which we could

720
00:34:53,199 --> 00:34:57,360
afford on our own, and so that also fed into

721
00:34:57,360 --> 00:35:00,199
the decision. It's not an easy one to leave him.

722
00:35:00,079 --> 00:35:04,000
Speaker 1: But he he's he is in a very good situation,

723
00:35:04,280 --> 00:35:07,639
and so that is the answer. And then you'll visit

724
00:35:07,679 --> 00:35:09,320
and you'll visit him several times a year.

725
00:35:09,400 --> 00:35:11,679
Speaker 2: Yeah, yeah, I just we're gonna come back four times

726
00:35:11,719 --> 00:35:14,239
a year because that's required of my husband's job, and

727
00:35:14,280 --> 00:35:17,079
so obviously we'll be doing that and seeing Thomas once.

728
00:35:16,920 --> 00:35:19,119
Speaker 1: A quarter and that that will be that.

729
00:35:19,440 --> 00:35:21,559
Speaker 2: So he'll continue to live his best life at his

730
00:35:21,639 --> 00:35:24,559
current house where he has amazing caregivers. And I don't

731
00:35:24,559 --> 00:35:27,679
feel guilt about that, and no one can make me right.

732
00:35:27,800 --> 00:35:29,599
Speaker 1: And it's it's kind of like I mean, it's it's

733
00:35:29,920 --> 00:35:32,519
you'll probably see him more than I see my adult children.

734
00:35:33,639 --> 00:35:36,639
Great points. Yes, that's a great point. I mean, I'm

735
00:35:36,639 --> 00:35:38,599
just putting it out there. I know that, like our

736
00:35:39,000 --> 00:35:41,760
our thirty year old are now thirty year old. I'm

737
00:35:41,880 --> 00:35:44,199
lucky if I see them maybe once or twice a year.

738
00:35:44,239 --> 00:35:47,519
We talk to them every day, I'd say every day.

739
00:35:47,559 --> 00:35:50,280
We talk to them a couple time, maybe like a

740
00:35:50,320 --> 00:35:52,440
couple times a week. I mean, I know, we text

741
00:35:52,440 --> 00:35:55,920
a lot. We mean more than a lot, right, But

742
00:35:56,039 --> 00:35:57,960
I mean so maybe every if you count that as

743
00:35:57,960 --> 00:36:00,519
talking every day. We do a lot of gifts and

744
00:36:00,519 --> 00:36:04,239
stuff like that. When but seeing them in person, you're

745
00:36:04,280 --> 00:36:06,039
going to see Thomas probably more than I see my

746
00:36:06,079 --> 00:36:09,960
adult children. Honestly, that might be true unless they unless

747
00:36:10,000 --> 00:36:13,440
you know, Chase decides to move here. So I'm just saying,

748
00:36:13,639 --> 00:36:16,119
so a lot of people that have twenty seven year olds,

749
00:36:16,599 --> 00:36:19,119
we get asked the question do you see them four

750
00:36:19,159 --> 00:36:21,559
times a year? Are you if they're out of state?

751
00:36:22,000 --> 00:36:24,440
You know, it's like and they you want you know,

752
00:36:24,480 --> 00:36:27,639
they probably go off and they live their lives and

753
00:36:27,800 --> 00:36:31,519
they do that usually around at twenty one. Yeah, well,

754
00:36:31,559 --> 00:36:32,639
and you know what that reminds me.

755
00:36:32,679 --> 00:36:34,639
Speaker 2: Shout out to Sea Nunes too, because I know she

756
00:36:34,760 --> 00:36:37,239
has a child with special needs as well.

757
00:36:37,079 --> 00:36:39,519
Speaker 1: Who she also has separate from her house.

758
00:36:39,719 --> 00:36:43,159
Speaker 2: And she responded to that beach on Instagram and made

759
00:36:43,199 --> 00:36:47,159
a really fantastic point, and that is she wants to

760
00:36:47,199 --> 00:36:51,800
be able to feel comfortable that once she's gone, her

761
00:36:51,840 --> 00:36:53,280
son will still be cared.

762
00:36:53,000 --> 00:36:54,480
Speaker 1: For and still have a play point.

763
00:36:54,960 --> 00:36:56,920
Speaker 2: And I was like, that is a great I hadn't

764
00:36:56,920 --> 00:36:59,239
even thought that far ahead, but that was such a

765
00:36:59,280 --> 00:37:00,000
fantastic point.

766
00:37:00,400 --> 00:37:02,280
Speaker 1: You're not going to be We're not going to be

767
00:37:02,320 --> 00:37:02,800
here forever.

768
00:37:03,000 --> 00:37:05,000
Speaker 2: You know, that's something I had never even considered as

769
00:37:05,039 --> 00:37:07,119
part of the decision making and moving him out, And

770
00:37:07,159 --> 00:37:10,000
it's such a great point that I won't be here forever.

771
00:37:10,360 --> 00:37:13,440
Speaker 1: And if he does outlive me, then I.

772
00:37:13,400 --> 00:37:15,519
Speaker 2: Want to know that he's in a good place, right

773
00:37:15,599 --> 00:37:18,239
and I know he is, and you know he is,

774
00:37:18,679 --> 00:37:21,599
and you feel great about that, and that's that's a

775
00:37:21,719 --> 00:37:24,360
great thing. That's a fantastic thing, And that's what you're

776
00:37:24,360 --> 00:37:28,280
supposed to do as a parent, whether no matter who

777
00:37:28,320 --> 00:37:30,599
that kid is, you're trying to set that kid up

778
00:37:30,639 --> 00:37:34,800
for being in a place where they're somewhat independent and

779
00:37:34,840 --> 00:37:39,079
they're taken care of whatever that looks like, that looks

780
00:37:39,119 --> 00:37:41,559
like in their particular situation. I mean, it looks different

781
00:37:41,599 --> 00:37:44,000
for me than it does for you. It looks different

782
00:37:44,000 --> 00:37:46,280
than for my boy than it does for your boy,

783
00:37:46,800 --> 00:37:49,719
But in either case they're taken care of.

784
00:37:50,559 --> 00:37:52,519
Speaker 1: Yeah, yeah, that's exactly right.

785
00:37:53,199 --> 00:37:56,280
Speaker 2: And you know there have been is I'm not trying

786
00:37:56,280 --> 00:37:58,519
to say that all caregivers have been perfect, and we've

787
00:37:58,519 --> 00:37:59,639
actually fired one.

788
00:37:59,719 --> 00:37:59,960
Speaker 1: I know that.

789
00:38:00,039 --> 00:38:03,519
Speaker 2: That was another question and you know, so it there's

790
00:38:03,599 --> 00:38:07,000
some that aren't great, and so I'm obviously very on

791
00:38:07,079 --> 00:38:09,320
top of that and cognizant of that and and check

792
00:38:09,360 --> 00:38:12,599
in quite a bit. And but but also the primary

793
00:38:12,679 --> 00:38:15,000
ones who do care for him, who have been around forever,

794
00:38:15,679 --> 00:38:18,599
they are phenomenal, and I just couldn't feel more comfortable

795
00:38:18,639 --> 00:38:20,960
about the fact that they know. Also when there's a

796
00:38:21,000 --> 00:38:24,719
caregiver that's not treating him exactly the way that they

797
00:38:24,760 --> 00:38:29,559
would and he's never been mistreated, but you know, there's

798
00:38:29,599 --> 00:38:34,000
just some people that give him more engagement than others.

799
00:38:34,119 --> 00:38:37,159
Speaker 1: And so that's important to me. And I just will say,

800
00:38:37,280 --> 00:38:39,920
like if there's one thing I've there's a lot of

801
00:38:39,920 --> 00:38:43,440
things I know about Miriam about mock since we are

802
00:38:43,559 --> 00:38:47,480
best friends and she is a freaking control freak, you guys, Like,

803
00:38:48,480 --> 00:38:50,360
I mean, it just is what it is, Like, it's me,

804
00:38:51,000 --> 00:38:54,159
she's she is. She's a control freak, like in about

805
00:38:54,199 --> 00:38:57,119
everything and that Like sometimes that's annoying, but at the

806
00:38:57,440 --> 00:38:59,880
same time, I kind of love it. I've learned to like,

807
00:39:00,000 --> 00:39:03,559
I've learned to love it over the past fifteen years.

808
00:39:03,599 --> 00:39:07,599
And she's like that in her personal life. She's like that.

809
00:39:08,239 --> 00:39:11,519
So when you see like with their kids, with their activities,

810
00:39:11,559 --> 00:39:14,039
with who they are like when it comes to Thomas,

811
00:39:14,159 --> 00:39:16,679
I've seen her in action. She is a control freak.

812
00:39:16,760 --> 00:39:20,280
So I would imagine if somebody is not like maybe

813
00:39:20,320 --> 00:39:24,239
just the best caretaker, she's probably gonna be like, that's

814
00:39:24,239 --> 00:39:27,519
not gonna fly, need you and needs you to go

815
00:39:27,519 --> 00:39:31,800
ahead and skidattle it needs you to go. Yeah.

816
00:39:32,280 --> 00:39:36,039
Speaker 2: So now people want to know how he's doing now

817
00:39:36,880 --> 00:39:39,760
and he and is he in pain? Last year I

818
00:39:39,760 --> 00:39:41,760
would have given you a very different answer than this year.

819
00:39:41,800 --> 00:39:44,000
So last year was a rough year for him. And

820
00:39:44,119 --> 00:39:46,719
the hardest thing about Thomas is he can't communicate. It's

821
00:39:46,800 --> 00:39:51,400
always a guessing game. If he's upset and whining and moaning,

822
00:39:52,079 --> 00:39:54,360
we have no idea does he have an itch that

823
00:39:54,400 --> 00:39:57,199
he can't scratch, or does he have something internally going

824
00:39:57,199 --> 00:39:59,440
on that's causing him real pain. I mean he's had

825
00:39:59,519 --> 00:40:01,559
I can't even count the number of surgeries he's had.

826
00:40:01,840 --> 00:40:03,440
You know, he's fed with a G tube, he's got

827
00:40:03,440 --> 00:40:07,119
a permanent catheter. You know, there's he's had a spinal

828
00:40:07,119 --> 00:40:09,400
fusion and then he's had all of that fuse spine

829
00:40:09,519 --> 00:40:13,039
ripped out. Like he's gone through so much that of

830
00:40:13,199 --> 00:40:16,320
excruciating pain that I cannot even begin to imagine. So

831
00:40:16,639 --> 00:40:18,960
every time, you know, he's just having a regular day

832
00:40:19,119 --> 00:40:22,280
and he's uncomfortable, I don't know where.

833
00:40:22,320 --> 00:40:23,400
Speaker 1: It's always a guessing game.

834
00:40:23,559 --> 00:40:25,800
Speaker 2: We can give him tailan all, we can shift his position,

835
00:40:25,920 --> 00:40:28,559
we can try all these things. Last year it was very,

836
00:40:28,639 --> 00:40:31,719
very difficult, and we still don't know why he suffers

837
00:40:31,760 --> 00:40:32,519
from kidney stones.

838
00:40:32,599 --> 00:40:34,599
Speaker 1: Sometimes that can be a problem. We just never know.

839
00:40:35,079 --> 00:40:37,559
Speaker 2: And last year when he came home for Christmas, it

840
00:40:37,679 --> 00:40:40,760
was rough and my body was really I mean I

841
00:40:40,880 --> 00:40:43,679
was hurting after he left that day because I was

842
00:40:43,800 --> 00:40:46,559
constantly moving around trying to make him comfortable, hoping I

843
00:40:46,559 --> 00:40:49,480
could figure out what is bothering. You never could, And

844
00:40:49,519 --> 00:40:52,800
it was a really rough Christmas. This year, I don't

845
00:40:52,800 --> 00:40:55,880
know why. We never do completely different. He's had a

846
00:40:55,960 --> 00:40:58,480
much better year. He was a delight at Christmas time,

847
00:40:58,599 --> 00:41:02,039
just so happy and comfort and just a joy. He

848
00:41:02,199 --> 00:41:03,960
was joyful in the house. It was a joy to

849
00:41:04,000 --> 00:41:06,199
have him in the house. He was just great. And

850
00:41:06,239 --> 00:41:08,599
so you know, I guess, like every person, he has

851
00:41:08,639 --> 00:41:12,760
his ups and downs. His downs are much more significant

852
00:41:12,800 --> 00:41:16,880
than a regular person because of all of his disabilities.

853
00:41:16,920 --> 00:41:19,920
But he's really good right now, He's really really good.

854
00:41:19,920 --> 00:41:22,639
And he has defied expectations. That was another question. People

855
00:41:22,639 --> 00:41:26,480
were like, you know what, what has he defied doctor's expectations.

856
00:41:26,519 --> 00:41:31,400
His first pediatrician ever, who lasted three months before I

857
00:41:31,400 --> 00:41:34,519
immediately left, told me that he would live to be twelve.

858
00:41:35,199 --> 00:41:38,000
And then he told me that when Thomas was having

859
00:41:38,039 --> 00:41:40,280
failure to thrive because he kept throwing up all of

860
00:41:40,280 --> 00:41:43,679
the formula, and I was just determined not to do

861
00:41:43,760 --> 00:41:46,920
this horrible procedure where they tie up the end of

862
00:41:46,960 --> 00:41:49,800
his esophagus and make it impossible for him to throw up.

863
00:41:50,039 --> 00:41:52,199
I was like, I'm not doing that to a three

864
00:41:52,239 --> 00:41:54,480
month old. I'm not doing that. There's going to be

865
00:41:54,480 --> 00:41:56,199
a better way, Like I'll give him, I'll get him

866
00:41:56,199 --> 00:41:59,679
a G twoe whatever. And he told me that I

867
00:41:59,719 --> 00:42:02,440
would responsible for his death if I didn't do that surgery,

868
00:42:02,559 --> 00:42:06,239
and I was like, you're fired. Yeah. I immediately got

869
00:42:06,400 --> 00:42:10,199
a different pediatrician who's been wonderful and who's been Jackson's

870
00:42:10,239 --> 00:42:11,639
doctor too for his whole life.

871
00:42:12,039 --> 00:42:14,440
Speaker 1: So yes, he defied all expectations.

872
00:42:14,559 --> 00:42:17,199
Speaker 2: This doctor who said he'd lived to be twelve, Thomas

873
00:42:17,280 --> 00:42:18,840
is like him twenty seven.

874
00:42:19,679 --> 00:42:22,480
Speaker 1: Yeah, you can suck it. He should have a cape.

875
00:42:22,719 --> 00:42:24,719
We should get Thomas a cape with the big tea

876
00:42:24,800 --> 00:42:28,239
on it, like super Tea. He's a freaking superhero. This kid,

877
00:42:28,440 --> 00:42:31,239
he's a superhero. And you're right, I mean all the

878
00:42:31,960 --> 00:42:35,079
she talks about, all the surgeries. My god, just objectively,

879
00:42:35,159 --> 00:42:38,360
I've washed over the past fifteen years, all the surgeries

880
00:42:38,400 --> 00:42:41,599
this kid and you being in and out of the hospital,

881
00:42:41,719 --> 00:42:44,920
and it's like, I just and then he'll just I

882
00:42:44,920 --> 00:42:47,000
mean he had COVID, for Christ's say.

883
00:42:46,880 --> 00:42:50,519
Speaker 2: Yeah, yeah, early on where I wasn't allowed to stay

884
00:42:50,559 --> 00:42:51,559
in the hospital with him.

885
00:42:51,760 --> 00:42:54,559
Speaker 1: It was horrible. I just remember all that, and I'm thinking,

886
00:42:54,760 --> 00:42:57,360
he and then he's just like, yeah, I'm fine, I'm good,

887
00:42:57,880 --> 00:43:01,199
it's all good. I got this. It's just like if

888
00:43:01,239 --> 00:43:05,119
anybody is immunocompromised, it's him. And he's just like, no,

889
00:43:05,280 --> 00:43:07,480
I mean this is fine. COVID. You can take COVID.

890
00:43:08,320 --> 00:43:10,760
You see me. I've got worse thing to worry about.

891
00:43:11,159 --> 00:43:15,039
It's like up yours, China virus. I got this. Yeah.

892
00:43:15,079 --> 00:43:18,039
I mean, he's just an absolute rock star. This kid.

893
00:43:18,320 --> 00:43:22,000
He unbelievable, a testament to the human like spirit.

894
00:43:22,679 --> 00:43:28,039
Speaker 2: Yeah, he's he's completely and totally incredibly amazing. I think

895
00:43:28,119 --> 00:43:31,159
the last question that just dealt with like moving him

896
00:43:31,199 --> 00:43:34,400
out that I think it was actually that same person,

897
00:43:34,599 --> 00:43:35,719
or maybe it was one of the insiders.

898
00:43:35,719 --> 00:43:36,639
Speaker 1: I can't remember who.

899
00:43:36,440 --> 00:43:38,760
Speaker 2: Asked it, but somebody was like, can you not just

900
00:43:38,880 --> 00:43:40,920
have caregivers live with you?

901
00:43:41,519 --> 00:43:43,960
Speaker 1: And that was never something that I.

902
00:43:43,880 --> 00:43:46,639
Speaker 2: Could do in this house, Like we just simply don't

903
00:43:46,679 --> 00:43:48,639
have the space for somebody to live here full time.

904
00:43:48,880 --> 00:43:50,719
Speaker 1: And I don't have the money to do that either.

905
00:43:50,800 --> 00:43:54,239
Speaker 2: That's not some people can afford that I can't, and

906
00:43:54,239 --> 00:43:58,920
and I that's I don't have that kind of expendable cash.

907
00:43:59,039 --> 00:44:02,360
And so again, you know, South Carolina does not provide

908
00:44:02,400 --> 00:44:05,159
the same sorts of benefits that he receives here in Indiana,

909
00:44:05,159 --> 00:44:07,480
where he's comfortable and safe, and I know he's in

910
00:44:07,519 --> 00:44:09,559
a good space, so that's.

911
00:44:09,400 --> 00:44:11,480
Speaker 1: Why he will stay here.

912
00:44:12,199 --> 00:44:15,840
Speaker 2: And then I think the last thing is that I

913
00:44:15,880 --> 00:44:18,119
wanted to make sure that I shouted out Pastor Shelley,

914
00:44:18,440 --> 00:44:22,519
whose only question was how can we best support you?

915
00:44:23,599 --> 00:44:27,320
Speaker 1: And I was like Pastor Shelley, right, I mean, that's

916
00:44:27,360 --> 00:44:30,360
like we both were like, that is such a typical

917
00:44:30,440 --> 00:44:33,639
question of Pastor Shelley, it really is.

918
00:44:33,800 --> 00:44:36,079
Speaker 2: And that and she wasn't the only one. Like other

919
00:44:36,079 --> 00:44:38,760
people were like, what can we do? And there's nothing

920
00:44:38,760 --> 00:44:41,239
to be done. I mean there's you know, I guess

921
00:44:41,639 --> 00:44:44,199
if I were going to give advice to strangers about

922
00:44:44,199 --> 00:44:46,960
how best to support me, I would say, trust me

923
00:44:47,320 --> 00:44:50,440
to make the best decisions for my kid, that's all.

924
00:44:50,840 --> 00:44:53,800
Trust me that I know him best and that I

925
00:44:53,800 --> 00:44:56,400
would never put him in harm's way, and that I

926
00:44:56,400 --> 00:44:59,480
would always make decisions thinking about what's best for him.

927
00:44:59,599 --> 00:45:02,639
That's the way to support me and other moms like me.

928
00:45:03,199 --> 00:45:06,440
Speaker 1: Right, And if you continue to go after her, I

929
00:45:06,480 --> 00:45:09,679
will cut you. Well.

930
00:45:09,719 --> 00:45:13,760
Speaker 2: She blocked me on Instagram, and so yeah, a lot

931
00:45:13,800 --> 00:45:15,599
of people went after her though, And thank you to

932
00:45:15,639 --> 00:45:17,559
all those people who might be listening that did.

933
00:45:17,760 --> 00:45:21,639
Speaker 1: Just I appreciate this off people just step off. Yeah, okay,

934
00:45:21,679 --> 00:45:24,119
so you feel good, you feel like you like, now

935
00:45:24,280 --> 00:45:25,199
you feel good?

936
00:45:25,760 --> 00:45:28,360
Speaker 2: I think so. I mean I hope that I am hard.

937
00:45:28,480 --> 00:45:31,320
Like it wasn't hard. I mean, you know, it's very

938
00:45:31,320 --> 00:45:33,239
easy to talk about your own life because you're an

939
00:45:33,239 --> 00:45:36,599
expert at it, right, Yeah, okay, I mean it wasn't hard,

940
00:45:36,639 --> 00:45:38,920
And I hope I just hope that it I hope

941
00:45:38,920 --> 00:45:39,639
that people.

942
00:45:39,400 --> 00:45:41,599
Speaker 1: Got out of it what they wanted to get out

943
00:45:41,599 --> 00:45:44,519
of it. That I think, Yeah, I think we answered

944
00:45:44,559 --> 00:45:46,840
a lot of the questions most all of the questions

945
00:45:46,880 --> 00:45:49,800
really that were posed to you. And if people have

946
00:45:49,840 --> 00:45:51,320
any other questions, I'm sure you can get them in

947
00:45:51,360 --> 00:45:53,320
the comments. We can look at some of the comments

948
00:45:53,320 --> 00:45:57,320
from this one. But but yeah, I love Thomas. He's

949
00:45:57,320 --> 00:45:59,960
an angel, an angel sent from heaven, and I'm glad

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00:46:00,159 --> 00:46:01,840
that we had an opportunity to talk about him today.

951
00:46:01,920 --> 00:46:04,039
I'm glad that we need you too, and you too

952
00:46:04,599 --> 00:46:08,079
until next time, We'll talk to you later. Thanks for watching.

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00:46:08,159 --> 00:46:10,079
Speaker 2: We'll be back in January sixth, so make sure to

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00:46:10,119 --> 00:46:12,239
tune in and bring a friend, Follow.

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00:46:12,039 --> 00:46:14,960
Speaker 1: Us and subscribe on YouTube, iTunes, Spotify, or wherever you

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00:46:14,960 --> 00:46:16,559
get your podcasts. Link in bio