Queens On A Roll

S2 Episode 4: A Mother and Her Courageous Son

Latavia & Various Guests Season 2 Episode 4

In this episode I sit down with the lovely Ms. Darlene and her courageous son, Silas to discuss what their lives are like now since he was diagnosed with Rosai Dorfman syndrome. So Come Roll with Us!

Description of Image: Black background On the left is an African American female with a white off the shoulder shirt in a wheelchair. Then Queens On A Roll in Gray Letters with a purple outline with a crown on the Q. The word Roll looks like a wheelchair and the word podcast in Gray Letters with a purple outline in all four corners


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(Instrumental Music & Singing) Wooo Queens, Queens, Queens & Bells Chiming

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Hey, everyone, and welcome back to

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Queens On A Roll podcast.

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This is Latavia here and I have the lovely Ms.

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Darlene here with me today. Hey, Ms. Darlene. Hi.

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Good afternoon.

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Good afternoon, everyone.

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How are you doing today? Pretty good.

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I cannot complain.

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That's great.

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So let's roll.

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(Instrumental Music)

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So here at Queens On A Roll Podcast,

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we talk about Kings and Queens and also

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parents of people who are ably different.

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So I hear that you have a

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king who is ably different.

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Can you please let me know more about that? Yes. Okay.

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So first of all, my name is Darlene Benson,

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and I'm sitting here with my son, Silas.

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Hi, nice to meet you. Say hi Silas. Hi.

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So Silas is 13.

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He's an honor student at the school, and he recently

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became blind at nine years old, which was caused by

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a rare disease, something called Rosai Dorfman Syndrome.

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Him being diagnosed with this was very new for us.

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I've never heard of that before

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I still don't know much about it, but that

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caused his visual impairment, and he has a bit

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of a hearing impairment due to that as well. Wow.

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That has to be a struggle for you, Silas. How is it?

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Is it hard?

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Is it difficult?

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It's sometimes difficult. Okay. And why?

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I guess, this new disability in my life kind of took away

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a lot of things that I used to like doing. A lot. Okay.

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I can't relate because I got my disability when I was

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born, but I can tell you that it is difficult.

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I have my period of you know having to adjust.

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I think we all have to go through that.

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But I will say it's different when you were able

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to do things on your own, and then all of

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a sudden something comes in and takes away that ability.

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So I sympathize with you.

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I feel you is definitely difficult and hard, but

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I commend you cuz you're still killing it.

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You're still an honor roll student, and that's great.

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That is so great.

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That is what we need to see more of anyway, right?

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Because even though we have challenges,

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we can overcome those challenges.

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So I'm still super proud of

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you and keep doing great things.

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(Delayed Beat Sound Effect)

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How was it for you, Ms.

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Darlene, as a parent?

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As a parent, first of all, it was scary

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not knowing what is taking away your child's abilities. You know

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You automatically think the worst.

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And as a parent, you want to protect.

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That's your first instinct.

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Like, I have to protect my child to save him.

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But when you have no ability to

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stop what's going on, you feel helpless.

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So I went through that period, and then I went through you know

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a little depression period because I was sad for him. You know

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He was a big video gamer, loved video games, very

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active kid, loved playing outside, and that was taken away. You know

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So now he's learned how to

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adjust over these past few years. You know

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He gets online with his friends to chat in the group.

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He doesn't get to play, but he still chats. He has fun.

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So that's something that filled in that void.

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And as far as outside activities, we

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do what he can do now.

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So he can still enjoy amusement parks. You know

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He can still enjoy going out, good dinner,

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(Ms. Darlene laughing)

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He like good food, you know, things like that.

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What's your favorite food Silas?

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I don't have a favorite food. You don't?

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You don't, you just love it all food. He love food, I love it, too.

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I love food, too. So I'm with you on that

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Yeah, I can definitely say it probably

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was an adjustment for my mom, too. You know

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She struggled, and then I can only imagine that

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it's difficult because there's not a lot of information

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out there, it seems like, for the syndrome.

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So if anybody has any information on this syndrome at

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all, please, please email me at queensonaroll. podcast@gmail.com so I could

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pass on the resources we need to help each other

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out and figuring out and supporting each other.

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That's what this is all about.

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So please, if anyone has any information,

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any resources, please send them my way.

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Again, the email is queensonaroll.podcast@gmail.com.

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(Cartoon Stair Climbing Sound Effect)

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So, Silas, what are some things you do to adjust now?

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How have you had to adjust?

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Well, when walking outside, I usually

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have to use a walking stick. Okay.

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And that helps you kind of

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know where you're going, right?

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Yeah, he's learned how to read and write braille.

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Oooo, that's awesome.

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That is definitely awesome.

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And a skill that's needed. Yupp

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He can type, what, 60, 70 words per minute now? Mhmm

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So he's learned to type better than me.

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Wooo Okay you know

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He's very quick and efficient on

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his iPad, on the computer. Good

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And on the iPad, do you use

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the text to speak feature?, voiceover? Yeah. Right.

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So he become very savvy with all of those things.

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That's great.

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I think iPhone has that feature, too, as well.

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Yeah, he has an iPhone. He knows how to work that thing, I don't

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When I have to do something on his phone

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for him, he takes it off of me.

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That's like the best thing, right.

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You kind of have to navigate and learn new skills.

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So I get it. I get it

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When one sense is gone, the other ones

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kick in and help out and get stronger.

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So he's gonna become a whiz

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and a master at just about everything.

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I can already see it for him.

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He's doing great already. Yupp

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(Cartoon Going Downstairs Sound Effect)

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So what are some positive aspects that came

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out of it for both of you? Let's see.

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Well, I've learned to be grateful for

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life in its every form because the situation

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could have absolutely been worse.

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Absolutely been worse. You know

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My first daughter passed away from cancer, which was

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another rare disease that fell upon our family.

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So when I look at that, compared to this, I'm

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grateful. Right You know that he has a chance to still be here.

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And whenever you're here, every given day is more hope.

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You know I believe in God.

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I believe in science.

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I believe God gave us the

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ability to work science for us.

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So I'm hopeful that's what it's done

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for me, it's restored my faith. Silas

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Any positives for you?

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I guess kind of taught me to be more appreciative

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of the things that I have in my life. Right.

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I would say for me too as well.

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You learn to appreciate the little things in life.

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Right.

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Because certain things are taken away from you.

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So those little, little small things that you can do and that you

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enjoy, you just get so much more joy out of it. You know so

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I would definitely say that's a

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positive for me as well.

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What were some challenges or what are

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some symptoms with Rosai Dourfman syndrome?

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Can you give us synopsis of it so that people out

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there have more of an imagery of it so that they

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can start researching for us and find some stuff out?

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Okay, so Rosai Dorfman.

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The best way I can explain it, it kind of

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begins with a swelling of the lining of your brain.

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So the brain itself is not swelling,

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but around it and in certain areas.

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So, like, around the eye socket, the ear socket,

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and it creates a pressure on the nerves.

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So that's what caused the pressure on his optic nerves to

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go thin and fade, and that's how he lost his sight.

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The same thing with his hearing.

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In one ear, he has a mild hearing loss.

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Thankfully, it's mild.

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So as it came on, it was so hard

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to tell, because the only thing that was different

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was he failed his eye test, his eye exam regular standard yearly eye exam.

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He failed it.

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Okay, so we follow up.

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But they couldn't correct his vision.

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No matter what prescription they gave

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them, they couldn't correct it.

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And it kept getting worse and worse and worse.

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So that prompted us to go for further testing.

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And only with an MRI and a cat scan, they were

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able to closely look and see that thickening of the lining.

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Wow.

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So with just that, they couldn't

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say it was Rosai Dorfman.

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We went through all types

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of blood tests, genetic tests.

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Still couldn't come up with anything.

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And you would think, with just swelling, you know what

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do you do to take care of swelling? You get steroids.

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Right. Mhhmm

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That did not help.

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They put him on the highest dose of steroids that they

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could possibly give him, and it didn't do anything.

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Nothing for that swelling.

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All it did was made him gain weight.

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So that was another downside.

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He put on a lot of weight due to their treatments.

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That didn't help.

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So we went from specialist to specialists, and we ended

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up at Memorial Sloan Kettering for kids, and they were

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the ones to identify it and started treating him with

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the medication for that, which seems to have helped.

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Okay, in what ways did it help? It stopped the progression.

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They believed, it even improved it a slight bit.

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So his hearing was a little bit worse and that

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improved.

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There's really no way to tell if things

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would have gotten worse without the medication.

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They don't really know how the progression goes,

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but I wasn't gonna risk it.

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I said, the medication is working.

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We're gonna stay on this medication.

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The other downside of the medication

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is that it causes skin breakouts.

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I'm going to say that compared to

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what it could be, is a blessing.

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You know He's still able to take it and it's working for him.

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Right.

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(Cartoon Twinkle Sound Effect)

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Were there any challenges going through school?

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Oh yeah, Silas wanna talk about schoo issues?

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so when it began, when he first started coming

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down with it, he was in regular school.

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This is 2019.

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He was having trouble seeing he didn't have a

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walking stick yet, so he was just getting by.

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By the grace of God.

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By the time we came back to school, COVID happened. Wow

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And Now we're home.

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We had a shutdown.

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Everybody's learning virtually, online, remotely.

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And that was a challenge because he couldn't

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learn the same way the other kids learned.

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He couldn't see what was on the screen.

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He had to take in everything audioly.

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So that was a great challenge.

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And even with that, he had to have a para to help him.

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We had trouble getting it was..that

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First year was crazy but he managed

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through and he still did well.

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He was still an honor student

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online with all those challenges.

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I honestly was grateful when school became back in

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person, right because it gave him the chance to get

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the services that he needed in person.

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And he has a wonderful vision teacher.

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He has a wonderful para.

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I could not have asked for more beautiful people.

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I'm so appreciative. Right. Silas. Mhmm We love them.

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Like, I've adopted them.

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They can't go anywhere now.

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I've threatened them. (Ms. Darlene laughing)

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They're part of the family. That's it. Right.

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But yeah, those are the challenges that we got through.

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I'm so grateful for that.

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And definitely when the school system

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works right, it works really good.

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You definitely have to do a lot of advocating for that.

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But when it goes well, it goes well.

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When they're good, they're great.

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How did you adjust to it, Silas?

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Like I know it had to be difficult at first because you

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were used to doing everything independently and now you had to

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rely on people to kind of help you do stuff.

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So did it get you into a low period or

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you were just like, okay, I gotta roll with

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the punches? You just kind of go with the flow? Okay.

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See, I like that.

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That's my attitude.

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I'll take everything that's thrown at me and

(14:12.8 - 14:14.3)

I'm just gonna with the flow.

(14:14.4 - 14:16.4)

It'll work itself out eventually.

(14:16.6 - 14:18.0)

I am the same way.

(14:18.1 - 14:19.8)

I am definitely the same way.

(14:19.8 - 14:21.9)

You get knocked down, you got to keep getting back

(14:21.9 - 14:23.7)

up and you got to keep going and keep trying.

(14:23.8 - 14:25.5)

So I'm with you on that one.

(14:25.5 - 14:27.5)

I'm definitely with you. Absolutely.

(14:27.6 - 14:28.7)

Like, nobody's perfect.

(14:28.8 - 14:30.5)

We're all different in our own way.

(14:30.6 - 14:32.3)

You know, you just...when you're ably

(14:32.3 - 14:35.7)

different, you do things differently. Still gets done. Exactly.

(14:35.8 - 14:39.1)

How was it like you know explaining it to

(14:39.1 - 14:41.5)

your friends and adjusting in that way?

(14:41.7 - 14:44.2)

It is definitely quite repetitive. Yeah

(14:44.5 - 14:48.3)

Yeah, that was another challenge, because the friends

(14:48.3 - 14:50.6)

that he had, well he still has them.

(14:50.7 - 14:55.4)

But you know kids don't understand yeah changes like that. You know

(14:55.4 - 14:58.1)

So to all of a sudden be rolling with

(14:58.1 - 15:00.7)

your homeboys, y'all doing every thing riding bikes

(15:00.7 - 15:02.8)

and scooters and running around the park, too.

(15:02.9 - 15:04.3)

Okay, he can't do that anymore.

(15:04.4 - 15:05.5)

They don't understand that.

(15:05.5 - 15:08.5)

A lot of times kids are scared of disabilities.

(15:08.8 - 15:10.8)

Yes, Yes, they are.

(15:10.9 - 15:12.5)

I could say I can relate Silas.

(15:12.6 - 15:14.1)

Growing up, I didn't really have

(15:14.1 - 15:15.0)

a lot of friends either.

(15:15.0 - 15:16.4)

They tease me a lot.

(15:16.6 - 15:21.4)

I was called wooden legs because I wear leg braces.

(15:21.5 - 15:24.6)

So they would tease me and say, you have wooden legs. You know

(15:24.7 - 15:27.2)

I come back with the one liners like, okay, I

(15:27.2 - 15:29.4)

have wooden legs, but you have a wooden brain.

(15:29.5 - 15:31.1)

Because I was the smartest kid in my

(15:31.2 - 15:33.8)

class, so I always had to help them.

(15:33.8 - 15:36.5)

So it's definitely an adjustment.

(15:36.6 - 15:39.3)

And I kind of wish they had more

(15:39.4 - 15:41.9)

programs where they put able body people with

(15:42.0 - 15:44.5)

ably different children at a young age.

(15:44.6 - 15:47.2)

Because when you do that, kids don't see

(15:47.2 - 15:50.5)

differences and it's easier to come together.

(15:50.6 - 15:53.3)

That's actually what my mom did in her

(15:53.4 - 15:55.7)

daycare, when she had Uniquely Making a Difference.

(15:55.7 - 15:57.9)

We had able body children and then we

(15:57.9 - 16:00.4)

had Ably, different children, and they were all

(16:00.4 - 16:03.4)

together, so they didn't see the differences.

(16:03.5 - 16:05.7)

They played with each other just like

(16:05.7 - 16:09.9)

they were "normal" children, because what's normal? You know so

(16:10.0 - 16:12.3)

I really wish we would do that

(16:12.4 - 16:16.7)

more often cuz it would bring more acceptance.

(16:16.7 - 16:18.6)

Yeah, that definitely makes a difference.

(16:18.7 - 16:20.4)

That would take away the fear, that would take away

(16:20.4 - 16:24.6)

the stigma, you know and they just be used to it, you know right?

(16:24.7 - 16:27.2)

I definitely wish they would do that more.

(16:27.3 - 16:30.2)

I think it would just help everyone in there because it's

(16:30.3 - 16:33.2)

already hard as it is, being ably different.

(16:33.2 - 16:35.0)

Then you have to explain that to

(16:35.1 - 16:38.2)

people, and then sometimes they're stand offish.

(16:38.4 - 16:39.5)

So I get it.

(16:39.6 - 16:41.5)

But trust me, it'll get easier

(16:41.6 - 16:43.5)

as you get older, I promise.

(16:43.6 - 16:46.2)

Nobody will even pay attention to it cuz

(16:46.3 - 16:49.3)

now, now that I'm older and I'm out in the

(16:49.4 - 16:52.0)

workforce, my friends don't even see it.

(16:52.1 - 16:53.8)

They're like, okay, come on, we're going.

(16:53.9 - 16:54.7)

You need my help.

(16:54.8 - 16:58.0)

All right, if that's the case, I'll help you. You know so Right.

(16:58.1 - 17:00.5)

It will level itself out. Silas

(17:00.6 - 17:02.3)

I promise. That's it.

(17:02.4 - 17:05.3)

just gotta get you some good friends. You will. You will

(17:05.3 - 17:07.6)

And those friends will be lifelong friends.

(17:07.7 - 17:08.5)

They'll stick around.

(17:08.6 - 17:14.3)

Like, I've had some friends for ten plus years now, so they'll stick around, I promise you. Yupp.

(17:14.4 - 17:16.4)

In the future, Silas, would you want

(17:16.5 - 17:19.1)

a see an eye dog or would you not? I would like one.

(17:19.2 - 17:20.0)

Yeah, definitely.

(17:20.1 - 17:22.5)

I think that would be very helpful for you.

(17:22.6 - 17:24.0)

And they are useful.

(17:24.1 - 17:26.4)

They actually have some for people

(17:26.5 - 17:28.5)

that are also physically challenged.

(17:28.6 - 17:31.5)

But I'm a little on the fenced about it because the

(17:31.5 - 17:35.1)

washing of the clothes part and the dog slobber for me,

(17:35.3 - 17:38.5)

I'm like, I don't know if I want that. Right.

(17:38.6 - 17:42.3)

So it's different for us because we're dog people.

(17:42.5 - 17:43.9)

We have two dogs.

(17:44.0 - 17:46.6)

So when this happened to him, I gave

(17:46.7 - 17:48.9)

him a dog for his 11th birthday.

(17:49.1 - 17:52.4)

I bought her for her to be like a help to him.

(17:52.5 - 17:53.7)

She's not much help.

(17:53.8 - 17:55.5)

She's a lot of company though.

(17:55.5 - 17:57.6)

But she likes to lay there and get rubbed.

(17:57.7 - 17:59.9)

She hasn't learned how to be a see an eye

(18:00.0 - 18:03.6)

yet, but she's great company, great and she's protective.

(18:03.6 - 18:05.1)

So you know we'll take it.

(18:05.3 - 18:07.1)

Right, I'll take that. I'll take that

(18:07.2 - 18:08.9)

They do train them.

(18:09.0 - 18:11.0)

They have training facilities for them

(18:11.1 - 18:15.0)

So if anybody knows any training facilities out there

(18:15.1 - 18:17.1)

that would be willing to help, let me know.

(18:17.2 - 18:18.6)

Drop it in the comments.

(18:18.8 - 18:20.1)

And I think I have some

(18:20.1 - 18:22.9)

information too, I could pass on. Yeah, I don't know.

(18:22.9 - 18:24.6)

She might be a little older now.

(18:24.8 - 18:26.3)

Too old for that training

(18:26.3 - 18:28.2)

stage cuz she's already two.

(18:28.5 - 18:29.9)

She's spoiled.

(18:30.1 - 18:32.1)

We might have to get another dog.

(18:32.3 - 18:35.4)

Especially since you're not they have them.

(18:35.5 - 18:37.3)

You know what, Silas, you should try to

(18:37.3 - 18:40.7)

go to the Ability Expo in New Jersey.

(18:40.7 - 18:42.0)

When they have the New Jersey

(18:42.1 - 18:44.5)

convention, you should definitely go there.

(18:44.5 - 18:48.2)

They have a lot of resources, really, really cool technology

(18:48.3 - 18:50.8)

to help out people who are ably different.

(18:50.9 - 18:52.9)

So that's a great resource too.

(18:53.0 - 18:56.7)

And you'll love it because everybody's there and we

(18:56.7 - 18:59.7)

all know the struggles and there's a lot of

(18:59.7 - 19:02.1)

resources out there and they'll talk to you and

(19:02.1 - 19:04.6)

they'll give you resources about where to go.

(19:04.7 - 19:06.0)

We go every year. oh

(19:06.2 - 19:07.8)

Yeah, the dogs are there too.

(19:07.9 - 19:09.3)

They go every year.

(19:09.4 - 19:10.6)

So it's a great resource.

(19:10.7 - 19:11.9)

We go every year.

(19:12.0 - 19:14.4)

I will be there next year so we can always

(19:14.4 - 19:16.4)

try to link up and make sure we go together.

(19:16.4 - 19:17.6)

But it's great.

(19:17.7 - 19:18.6)

I really love it.

(19:18.6 - 19:20.1)

Okay, I definitely got to keep in touch for

(19:20.1 - 19:22.0)

that because that's the first time hearing about it.

(19:22.1 - 19:24.5)

We're still kind of new to this community.

(19:24.7 - 19:28.6)

Don't worry, we all love to support each other. Oh, yes.

(19:28.7 - 19:31.5)

And when it comes to riding bikes, they have

(19:31.6 - 19:33.6)

a way that you could ride a bike Silas

(19:33.6 - 19:35.7)

They train you to listen to

(19:35.9 - 19:38.5)

the different sounds of the surroundings.

(19:38.6 - 19:40.9)

So you can definitely still ride a bike.

(19:40.9 - 19:42.7)

I have to look it up. We'll look into that.

(19:42.7 - 19:44.2)

That's good exercise too.

(19:44.2 - 19:46.8)

(Drum Roll Sound Effect)

(19:46.8 - 20:27.6)

(Instrumental Music)

(20:27.6 - 20:31.7)

I always like to close out with a quote of the episode.

(20:31.9 - 20:34.2)

So do you guys have a quote or some

(20:34.3 - 20:36.9)

knowledge you can drop on us or is there

(20:36.9 - 20:39.8)

something that you would like someone to know? Yes.

(20:39.9 - 20:42.9)

People, they fear what they don't know.

(20:42.9 - 20:44.1)

Ooo I like that one.

(20:44.1 - 20:45.7)

Fear what they don't know.

(20:45.9 - 20:48.5)

Don't be afraid to communicate. Right.

(20:48.6 - 20:49.8)

To interact with him.

(20:49.9 - 20:52.4)

He's a regular person just like everybody else.

(20:52.5 - 20:54.4)

He may not see you well, but

(20:54.5 - 20:56.4)

he'll keep you laughing all day, right?

(20:56.5 - 20:58.0)

So, are you a jokester?

(20:58.1 - 21:00.7)

You like pranking, or you like telling jokes?

(21:00.8 - 21:01.8)

I like telling jokes.

(21:01.8 - 21:03.7)

He's a jokester (Ms. Darlene laughing)

(21:03.7 - 21:06.9)

Do you have anything you want parents to know, mom,

(21:07.0 - 21:09.0)

or do you have anything you want parents to know Silas?

(21:09.1 - 21:12.3)

if your kid ever has some sort of

(21:12.3 - 21:15.6)

disability or anything of that sort, just to keep

(21:15.7 - 21:18.6)

hoping for the better, I would definitely say that.

(21:18.7 - 21:19.1)

Right.

(21:19.1 - 21:22.4)

And I'll just add to that,you know that change

(21:22.4 - 21:23.8)

is not the end of the world.

(21:24.0 - 21:24.9)

Things happen.

(21:25.1 - 21:28.0)

People change, and you just gotta roll with it.

(21:28.1 - 21:30.6)

We have our moments where we could be sad. Okay.

(21:30.6 - 21:31.7)

You get that day.

(21:31.8 - 21:33.7)

Next day, you pick it up. You keep going.

(21:33.8 - 21:35.4)

Listen, we're going to end on that

(21:35.5 - 21:37.5)

note because I can't compete with that.

(21:37.5 - 21:38.4)

That was great.

(21:38.5 - 21:40.8)

Thank you guys for coming on.

(21:41.1 - 21:42.3)

Thanks for having us.

(21:42.4 - 21:43.8)

We come on anytime.

(21:43.8 - 21:46.7)

Ohh Thank you, Thank you, Thank you.

(21:46.7 - 21:47.9)

So, thank you, guys.

(21:48.0 - 21:50.3)

Please continue to, like, subscribe and share.

(21:50.4 - 21:53.5)

I appreciate your support so, so much.

(21:53.9 - 21:55.8)

And just another side note.

(21:56.0 - 21:57.9)

This interview was conducted via

(21:58.0 - 21:59.9)

Zoom between myself, Ms.

(22:00.0 - 22:01.4)

Darlene, and Silas.

(22:01.5 - 22:02.9)

So if you're like, this is not

(22:02.9 - 22:05.1)

the audio quality I'm used to.

(22:05.3 - 22:07.1)

That is the reason why.

(22:07.6 - 22:09.9)

Again, thank you so much.

(22:10.0 - 22:12.1)

I really appreciate it.

(22:12.8 - 22:15.1)

And if you would like to donate to Queens On

(22:15.2 - 22:18.1)

A Roll podcast, you just have to create a patreon

(22:18.2 - 22:20.4)

account, click the tier that works for you.

(22:20.4 - 22:23.7)

I have four up there, guys, and I

(22:23.7 - 22:27.0)

promise I will have great, great content for you.

(22:27.0 - 22:30.0)

So thank you for your continued support.

(22:30.2 - 22:31.5)

I love you guys.

(22:31.6 - 22:33.8)

And if you have any questions for me

(22:33.9 - 22:35.7)

or any of my guests, you can submit

(22:35.8 - 22:39.8)

them to queensonaroll.podcast@gmail.com. Again.

(22:39.9 - 22:43.5)

That is queensonaroll.podcast@gmailcom.

(22:43.9 - 22:46.1)

And we are rolling out, guys.

(22:46.2 - 22:48.9)

See you next week. Peace.

(22:48.9 - 23:40.3)

(Instrumental Music)

(23:40.4 - 23:47.0)

PLEASE go follow our insta @queensonaroll.podcast & FB Queens On A Roll & submit those questions to queensonaroll.podcast@gmail.com

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