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66: Sturge Weber Dad- Evan C. (Full Transcript)

Updated: Mar 6


Jey (00:03.112)

Welcome into another episode of the Young Dad Podcast. I'm your host, Jay. It's a pleasure to be with you again for episode 63 of the podcast. We are getting so close to overall episode number 100. We're about five or six away in total between bonuses and mainstream episodes. So that's super exciting. We have a really cool guest coming on for episode total 100. So I'll tease that out now. He's really, really close to me.

He looks a little bit like me. He sounds a little bit like me. It's not my brother. It's someone that had me when I was really young, technically, he was young too. So just think about that, try to put those dots together. But I am joined today by, first of all, a great friend and someone that you guys haven't heard his lovely voice since December 18th, 2022, which is

Bonkers we thought has been a lot more recent than that, but we have a year to catch up on We have Just so much. Of course, we've stayed in touch. We've talked back and forth over the last year, but it's my good friend Evan He was back on episode 11 of the show. So when the show was a lot different So if you've been one of our longtime listeners since then, of course, thank you so much We appreciate that So yeah

Evan, welcome in. If the people don't remember you from last time, let me see if I can get you some greetings here. Your princess has a rare condition, an uncommon condition called Sturge-Weber syndrome. You're joining us from Down Under, down in Australia. Last time you were on, we talked about spiders, tarantulas, pizzas, soccer, rugby.

Jey (01:59.684)

which is some of the things we talked very deeply about. Sturge Webber, you brought some great awareness to what it is, made me more aware of what it is, made our listeners more aware, so that was great. I think that was.

That was a lot of it. You took us through your whole life journey pretty much. We'll probably do that again a little bit. The ups and downs, the good, the evil, the bad, the ugly. You're a husband, you're a father, you're a pretty damn cool dude, and you love America more than Australia, last time I heard. So, all jokes aside, Evan, thanks for being back on with us.

And I say that because you do like pineapple on pizza because that's a tragedy, unless you finally changed and grown up. But how's it going, man? Tell us about you, tell us about your life. Introduce yourself once again for the people.

evan corbett (03:05.61)

Yeah, G'day Jay and all the listeners out there. Thanks for having us back on. You sort of put me on the thing there saying that I like the Yang tanks over Australia. I don't know about that one buddy, especially if you take into consideration the differences of annual leave. But... Thanks again for having us on. It has been a while. I've got to admit I was shocked.

Jey (03:24.784)

No, I like I'll show you more too.

evan corbett (03:33.954)

when we realize it's been well over a year since I was on, because like you said, it felt like it was about six, eight months ago. That's amazing how much things occur in such a short period of time to really blow out the time periods, you know? Yeah, there's, I mean, the more things change, the more they stay the same, to be honest with you. I've still got my beautiful little princess with us. She's...

Jey (03:58.853)

You're true.

evan corbett (04:02.254)

She's 5 now, she's going on 16 with her attitude. She ended up getting a... I bought her a new surfboard, well, a surfboard for her 5th birthday and absolutely loved it until we took her to the beach that one time and all she wanted to do was sit on it and dig a hole. So that was... That was really interesting. Definitely not the way that I first envisioned it but that's the thing, you're...

You always make a plan in your mind how something's going to go ahead and then when it doesn't go that way you just got to roll with it

Jey (04:38.453)

No, super true.

evan corbett (04:38.554)

As for uh, as for as for the pineapple on the pizza look dude It has to remain. It's got to be it's a core ingredient to a fire fantastic pizza You know like you get roast chicken BBQ sauce Spanish onion fresh pineapple you get that's That fresh juiciness on there Just to break it up

Jey (05:00.668)

What's a Spanish onion? Now I'm more concerned what the Spanish onion is.

evan corbett (05:05.194)

Red onion.

Jey (05:07.076)

Oh, okay. That's what I thought, but I'm like, I've never heard it called a Spanish onion. What?

evan corbett (05:09.112)

Red onion

evan corbett (05:14.742)

Or do you know what they call a Spanish onion in Spain?

Jey (05:15.748)

Okay.

Jey (05:19.181)

An onion.

evan corbett (05:21.762)

That's it, it's just an onion.

Jey (05:23.376)

Okay. I was like, is that a trick question? But no, you're so right. I mean, the more things change, the more they stay the same. I mean, overall, things are, things are still things, right? Same wife, same kid. She's just a little bit older now. My kids are older. I mean, 2022, I mean, in December of 2022, I had a two year old barely. And I had a

Bye!

five going on six year old. But you know, it's the same, you know, the younger, the girls are right around that age. I say three is when they start to go into their three major years, four major, five major, six major, so it starts early. That attitude being a girl dad, it starts and it won't let up. It's only gonna get, not worse. You'll learn it, you'll understand a little bit more, but yeah, buckle up.

evan corbett (06:17.883)

Oh.

evan corbett (06:27.546)

I can definitely believe that she's starting to show a lot more traits of her mother. Thankfully she's at the other side of the house. I can hear her. She's way down there so she won't be able to hear that. She's very stubborn, very opinionated, very bossy, very cute, very sweet, huge heart.

Jey (06:34.512)

Be careful, your mom's around, so we don't want to say that too loud.

Jey (06:41.676)

Okay, then we're good. And okay, we're good, we're safe.

evan corbett (06:58.438)

Um, can flip off the handle at a moment's notice. So, oh, and then there's my daughter. So

Jey (07:08.298)

No, it's so true with the girls this age. The thing is, the way it gets worse is that they get smarter. So they get smarter so they're able to know how to work the system in just ever so slightly different ways. So they pick up on new things, new tactics, new abilities.

They get smarter, more intelligent, more emotionally intelligent. And so that's how it gets worse, is that it just gets easier for them. It gets harder for us, but easier for them.

evan corbett (07:41.579)

Yeah.

evan corbett (07:45.182)

Adi is going to... Definitely, well Adi is going to prep at the moment. So it's like a... It's sort of like a transition school before they go into kindergarten. And she's going to a... Like a private Christian school. And it's very interesting the new little tips and tricks she's coming home with that she's playing.

that she's using against me or against me, her mother. So I'm like, oh, she's picking things up from the other kids right on. Okay. Happy days. I've got a school kid now or soon to be anyway, when she gets through it and I'll have to learn her homework before she gets it so I can help her with, which I've got to admit, I'm kind of looking forward to it.

Jey (08:16.648)

Mm-hmm.

Jey (08:38.82)

No, homework's a lot of fun. It's real simple for the first couple years so far. I'm a couple years ahead of you. That where she's at in America would be called Head Start or pre-K kind of thing to where she's kind of just more socializing, engaging, not too many educational expectations and whatnot. And then at least kindergarten here.

They transition into, kindergartners are definitely treated very, very differently than the rest of the kids at school kind of thing. They really coddle the kindergartners to make sure that they adjust to kindergarten. They adjust to school, they adjust to routine. So it's very, very coddled still. Snup, nothing's really pushed too hard. At least here, they're given like packets of homework. They're given...

Their homework is very simple, it's more sight words, learning. The educational expectations aren't too high, especially for kids, because kids now, at least they're coming from all different walks, fast forward, take it back as four years ago and the kids going into kindergarten more than likely had a kind of a headstart or preschool or pre-K kindergarten, first grade kind of thing. And so they had more like

school system involvement from a younger age, I like two, three kind of thing. COVID happens, it throws all that off because daycare shut down, kids are just at home learning from, if they're learning at all, learning from siblings and TV and parents and whatnot. There's no like traditional school structure. That structure doesn't go back in place until these kids are now three, four years old. They maybe get a year of that versus while they were getting maybe two or three.

prior to kindergarten. So now kids are coming in just all over the place.

evan corbett (10:38.903)

It's...

It is, yeah, it's same but different here. So we have, we have like preschool, which is sort of like just a daycare where the kids just go, go these places. It's subsidized by the government, so it doesn't cost parents too much to go there. They finger paint. They just, you know, dick around, have food. Whereas some private schools have like, yeah, prep, which is sort of like a mini kindergarten.

Jey (11:03.601)

Yep.

evan corbett (11:10.858)

where they're doing the routines, the learnings and whatnot. I'm not sure if the public schools do it, but the private and the semi-private, obviously you have to pay for that luxury. So I actually had a bit of a heart attack to be honest when at his school, Rangers

Jey (11:28.072)

Mmm.

evan corbett (11:36.814)

from $7000 to I think $10,000 per year.

And I thought that the $7,000 actually started in year 7, so it was like $1,000 a year. Boy was I wrong. It's actually $7,000 for kindergarten and it slowly ramps up to about I think $10,000, $11,000 when they hit year 12. So yeah, fun times.

Jey (11:44.732)

That's crazy.

Jey (12:05.884)

Hey, super fun.

evan corbett (12:09.114)

Yeah Well at least with this school they do They really look out for like the special kids, you know, they'll do Because they're private they can sort of like run to their own curriculum in to a degree So they can set up individual educational programs for special kids who might will be lagging that kind of thing So that was one of the big draws of sending. Yeah, it was a big draw of sending Addie to a

Jey (12:18.311)

Yeah.

Jey (12:30.851)

That makes sense.

Jey (12:39.28)

Definitely. Now, I don't know if we covered it last time, but with her and with her Sturgeweber in anything, has her, and I know she's made just amazing progress since we last spoke. I kept up on it. You see me message you, damn near every time you put up something about her. I'm such a fan of that little girl. Like she is just, she's amazing. Everything that she's done. But with her and how...

evan corbett (12:57.579)

Right.

Jey (13:08.896)

Does it affect her cognition or developmentally? Or does it give her additional special needs or limitations when it comes to learning and education? Or even limit her social skills at all? Most people are probably thinking, if they're listening right this moment, they're probably thinking, well, Sturg Weber, is she also on the spectrum? Kind of where?

evan corbett (13:27.183)

and the winner is...

Jey (13:35.424)

Where is that the same but also different more specifically for her and other kids that may have search whatever?

evan corbett (13:42.21)

She she it's all of the above unfortunately So there is there is learning difficulties it does take her a while to get her head around Situations and she can very quick to frustration You got to think with her disability. It's degenerative. So she's essentially only got half a brain The right side of her

The left side of her brain is slowly getting starved of oxygen and blood flow so it's slowly dying off And it takes that a little bit longer for the other side of the brain to pick up those sets of skills So that's why we've actually had to delay her from starting kindergarten. She's actually going to start kindergarten a year later

evan corbett (14:31.498)

The other things is that she will... um... like socially it's... it's not too bad, she's very happy to try and make friends and what not.

evan corbett (14:57.774)

So it's like when she tries to play with her friends, she will try and set out a way how to play, communicate. But because she's got a speech disability, she thinks that she is saying the play plan perfectly. You know, let's do this, let's do that. But the kids don't fully understand it because she can't get the words out correctly.

So they won't know what to do, also they'll just run off and then she'll get really upset.

Jey (15:25.)

Mm.

evan corbett (15:30.966)

Um, she's only now able to write the letter A and D, but even then it's really sketchy because she struggles to hold a pen. Her eyesight's definitely improved. She was actually blind over Christmas after we spoke. I think the uh the 22...

Jey (15:40.027)

Okay.

Jey (15:55.728)

Mm.

evan corbett (15:59.394)

Yeah, the 22 Christmas we had a failed surgery and it ended up causing a detached retina. So she was blind over Christmas and it took quite a lot of fighting with the surgeons and the doctors for them to do an experimental surgery. I think in February last year for them to try and reattach that retina. So she got a vision back.

Jey (16:03.72)

Mm-hmm.

evan corbett (16:27.231)

She ended up having a stint putting her rider relieve the pressure from her glaucoma caused by the Sturge Webber

Jey (16:34.824)

Mm-hmm.

evan corbett (16:35.614)

And ever since then, actually her reading, well she can't really, she can't differentiate the letters, but she can try and read now, she can see a lot better. So that was a, that was actually a big positive.

Jey (16:46.908)

So the experimental surgery was kind of a success then.

evan corbett (16:52.826)

to reattach it but it could have gone really bad. So with her actually having better eyesight now that has definitely improved her learning at school. She does get a little bit shy and people still stare at her face. We actually went, I almost got into a massive fight at a grocery store. We went to a grocery store.

Jey (16:55.896)

Yeah.

Jey (17:11.089)

Mm-hmm.

evan corbett (17:20.63)

We went on a holiday this year actually, with the Ronald McDonald Foundation. So Maccas has a child's foundation here in Australia. I'm not sure if they have it over in the States where they support a whole lot of you know, sick kids and we've got, and they've got holiday homes. Oh, school. And so we ended up going to one of their holiday homes up on the north coast. And we're, we'd been, we'd spent all day at the beach and

Jey (17:27.694)

Mm-hmm.

Jey (17:31.517)

Mm-hmm.

Jey (17:36.24)

Yep, yep, they're the same thing here.

evan corbett (17:48.926)

You know, so she was a bit tired and her eye was really red. You know, as much as they can do laser surgery on her face, they can't go near the eye. So her eyelids very, very red. And we're walking through the supermarket and this bloke, this fucking bum who works there, who actually had facial tattoos himself, you know, obviously didn't have a nice life, was stuck on the shelf and he...

Jey (17:59.216)

Hmm.

evan corbett (18:14.61)

saw my daughter and he goes oh wow look at you you're like a little monster with your face paint. Thankfully Addy didn't think anything of it she was like no I got my pink milk blah I've looked at him and I could have fucking killed him because as much as she's aware that she looks different she's not fully aware how different she is and so we're trying to keep up that positivity we have her talking to

Jey (18:36.7)

Mm-hmm.

evan corbett (18:44.622)

try actually building up a relationship with the psych so when she gets that little bit older she'll be able to talk to it and regulate feelings and emotions but yeah other than that she's going she's gone pretty good the thing with Sturge Weber is it affects everyone differently like their brain it affects every brain differently you know like some poor kids you know their vegetables

Jey (18:50.129)

Okay.

Jey (18:55.441)

Definitely.

evan corbett (19:14.542)

Canada actually that's like a PhD she's you know she's a lawyer some fancy lawyer with PhD you know so it's the band the band is it's just it's so ranging for these kids unfortunately

Jey (19:32.569)

No, that's very true. So my ex and I, so my kid's mom, we actually just came to an agreement for my older daughter who's sick to actually get her into therapy. So by the time she cut, this comes out.

She