Season 02, Episode 14 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Alfacena "Millie" Barrett

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone i'm nadine vogel your co host of disabled lives matter, this is an amazing podcast but it's not just a podcast, it is a movement and helping me in this movement is norma stanley my amazing co host.

Norma: Hello everyone.

Nadine Vogel: hey norma I hear that we have a fabulous lady, we are interviewing today.

Norma: Yes, yes, Miss Alfacena Barrett and her everybody knows her as millie I actually know her as an amazing woman who has overcome so many different struggles and challenges and.

Norma: You know she actually adopted her nephew and you know he is a model and he rides horses and he does all kinds of amazing things.

Norma: And you know what I love about knowing the story is that they um you know she gives him life and vice versa, and so it's a beautiful thing to see, and I just wanted her to be able to share.

Norma: How she's done the things that she's been able to do over the years, with him, because he's you know millie just come on and say hi and just.

Norma: Come start telling your story.

Millicent: Yes, I am Alfacena Millicent Barrett and everybody affectionately call me millie because when I was growing up, they have problem calling Alfacena.

Millicent: So I was, I was brought up with my middle name instead and in shortened form of Millie. Yes, so I want to tell you first about my nephew/son, if you should say to me to anybody that your aunt calls you he will let them know that's not my aunt, that's my mom.

Millicent: So he lost both parents within a year his father died in 2006 of June and then his mother, shortly after his father died I got a call that she was diagnosed with cancer.

Millicent: put up a good fight, but she didn't make it so she died May of the following year, which is 2007 during that year was the time that I had surgery for my third cancer.

Millicent: And um there was no way for me to leave him in Jamaica, because he was in Jamaica they do have care for special needs but it's not spread wide in the country.

Millicent: I know there was a school, which was close by to them that they could have used but earlier on his mother did not choose to send him to that school she sent him to the regular school because he thought he that he would his speech.

Millicent: would be developed much better which didn't happen. Any how.

Millicent: lucky for him, he had a visa already so I told them to bring him to me, I was discouraged by my family members, because they know what I was going through.

Millicent: But it's like I can say that God had his plan, because when he came I met the right persons everybody that I needed in my life for that moment to get him settled in the US was.

Millicent: brought to my path so his adoption went through like a breeze they told me he had to be with me a year for his adoption to go through, but the person told me go ahead to the Court and get.

Millicent: custody um.

Millicent: not custody.

Nadine Vogel: Guardianship.

Millicent: guardianship that's right for him and getting him enrolled into school that was done.

Nadine Vogel: Millie, what type of disability does your son have.

Millicent: Oh sorry my son is 26 year old young man now with down syndrome.

Millicent: Okay, and his intellectual disabilities is consider moderate.

Nadine Vogel: Okay okay.

Millicent: When he came to me he has very little spoken language.

Millicent: It was very good of receiving the receptive language was good, but is, you know is. I missing the word now, his expressive language is very limited right, so any was like 11 at the time when I adopted him.

Nadine Vogel: Well you're you're thrown into the disability Community like overnight, what was that, like, for you.

Millicent: RIght. You know what when he was born with disability and it took me a while to remember that I used to go to a few meetings, even before so it's as if God was preparing me, so I had I got some pamphlets and i sent it to his mother, so when he came to me now.

Millicent: I wanted to find out everything that I need to do for him to progress.

Nadine Vogel: Right.

Millient: So I went to all the meetings inquire find meetings and go to different meeting I took him to a down syndrome doctor.

Millicent: have them getting fully checked out, and I said to him what level, he is and the doctor was like there's no level, and I was like because I know i've seen different features.

Millicent: Then I guess, I should say of down syndrome, so I thought it was a different level, he said, there was no different lever and.

Millicent: I asked a lot of questions I got him into school.

Millicent: And the class, he was in the teacher were very good they communicated with me they were the ones who introduced me to have him first back riding somewhere along the line and he loved it and for the first time.

Millicent: I think that was like two years later, so I realized that he was disappointed I recognize that feature on his face he wants to go riding that day, and it was too hot.

Millicent: And they call and say you know it's so hot to take the horses out and that look on his face tells me a lot and that he was very disappointed, even though he couldn't express himself.

Millicent: So in 2012.

Millicent: is like I got just like I tell my story, just like Abraham got a call to move to a place where god's gonna bless him that's how I felt that it's time for me to move because I was thinking about him what if I get sick.

Nadine Vogel: Right.

Millicent: What's going to happen to him, because I do have relatives in.

Millicent: At first it wasn't Georgia, as my brother is in Florida, and I was trying to move closer to him and he said they're planning to get a job in Georgia.

Millicent: And when I got off the phone I didn't even call him back and said, you know what i'm going to go to Georgia, because I have other relatives here and I have friends, who I grew up with that would be closer to him.

Nadine Vogel: That support system.

Millicent: Right, moral support.

Norma: Right, that you have to have.

Nadine Vogel: Right.

Nadine Vogel: So, how has your life changed since then.

Millicent: Basically.

Nadine Vogel: What have you learned about.

Nadine Vogel: You and the disability community.

Millicent: Yes, it's going to take a lot to say how my life has changed because when I adopted him I just gone through a divorce and I had a House so being divorce.

Millicent: I was free to do whatever I wanted to do to go wherever I wanted to go, so that got changed because now, I have to change my life to cater to him.

Millicent: And about his needs and can't go wherever I want to go I have to make sure, things are OK for him before I can plan to go anywhere luckily, for me, I got put out of my job at 2009.

Millicent: Because of my health so that made it easier.

Nadine Vogel: Right.

Millicent: Yes. I didn't have to worry about childcare and and stuff like that, when I was in Delaware so i'd be there when he goes on the bus.

Millicent: When he just came I was still working so two years later, two years later, was when I stopped working.

Millicent: and during that time during that first two years his brother, he has an older brother, he has older siblings was living on the next street so I did have a support system, but they move away from Delaware to Texas, because of jobs.

Nadine Vogel: But Millie, my question is more about you know what have you learned about the disability Community having a having a son, you know and now an adult son with disabilities, what has that taught you.

Millicent: That taught me that they are as regular as possible, if you make it look and look for the resources that they need their life can be as normal, as any other child.

Millicent: He in spite of his barrier to language he was quick, he was smart he learns to do everything he's good, with his hands he's he's good with his eyes he's very observant so whatever you want to him to do you just show it to him, so I realized that they can do almost anything.

Millicent: Just as long as they have the support the support system.

Nadine Vogel: I also think that and norma you and I have talked about this and it's also based on expectations.

Millicent: Yes.

Nadine Vogel: Expectation that they're going to do all these things.

Millicent: yeah.

Nadine Vogel: You force them to kind of live up to that expectation, so to speak.

Norma: Absolutely.

Nadine Vogel: Right and norma for you too.

Norma: you can't coddle them, you have to really.

Norma: put them to the test and let them see themselves as able to accomplish what you expect of them.

Millicent: Yes, that's what I realized because comparing to some that i've seen and with Vilair, they can be discipline don't let them do what they want to do.

Nadine Vogel: Right.

Norma: They will manipulate you or try.

Millicent: yeah just like regular children just.

Millicent: Like, for example, when I was with his mom before she passed and they've came for a visit and we went to a store and he was running around and.

Millicent: She I said to her, why are you so upset normal children do that, and she was like he's normal which I get what she's saying.

Millicent: But that's what regular children do the mess around in the store and play around stuff because then he was very much younger than 11 you know So yes, they they can be as normal as ever.

Nadine Vogel: Right yeah and I, and I think when we you know refer to the children as being you know typical and how they compare to the typical child, you know one of my, one of my, you know things is.

Nadine Vogel: What makes that child typical like why why, if they have special needs are they not typical right that distinction is always is always bothered because I also think that that sends a message.

Nadine Vogel: And not a message that we want now what I find really I want to say fascinating and overwhelming knowing about millie is that when you were doing all this.

Millicent: mm hmm.

Nadine Vogel: You had just experienced cancer, for the third time.

Millicent: Yes yeah.

Nadine Vogel: Right, I mean think it, you know norma, you know think how difficult it is, you have a child, born with a disability right you're not expecting it but could you imagine, having just gone through cancer three times and bringing all that in. All at the same.

Norma: Although I can't I can't and that's why I said that I really think people need to know that strength that you have to have gone through what you're going through and still.

Norma: Having the challenge of raising your son, who came to you know as a young boy, but who is you know needed all you needed all your help and how did you develop that strength. where do you think it came from.

Millicent: Well, that has to do with my faith in God.

Millicent: Because I got him when I deal with the third one.

Millicent: But after i've got and it was so funny in the year that I had to adopt him I had to get a clean bill of health which happened.

Millicent: And right after 2007 2008 the cancer return, one of the cancer return, because I have one the MALT lymphoma for me it's treatable but it's nagging it will come back time and time again, so it came back in 2008.

Millicent: And I don't think the doctor treated me properly that's my theory, because it came more aggressive in 2009 but like I said at that time, his brother was living next door, so I had a support system so.

Millicent: I was able to do, treatment and he was as long as his needs are met, he was quiet, he was helpful, he was very helpful.

Millicent: You could ask them to do things and he.

Millicent: would do it, he was a child who will keep his room clean that's what I loved about him.

Nadine Vogel: Wow.

Millicent: He would make his bed and his room had to be clean, so I didn't have any of that issue with him and he was helpful and oh go ahead.

Nadine Vogel: No, I was just gonna say we have to go to commercial break, but when we come back I norma I would love you know I believe millie has a book I would love to learn about the book and just.

Nadine Vogel: You know what let's talk about how you face cancer, not once, twice, three times, but if I understand correctly, five times.

Millicent: Five times right yeah.

Nadine Vogel: Oh my gosh. So for our audience, that alone should keep you at the edge of your seat don't go anywhere we'll be right back.

Voiceover: And now it's time for a commercial break.

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Voiceover: And now back to our show.

Nadine Vogel: Hello hello, this is nadine vogel I am joined by my co host norma stanley hey norma.

Nadine Vogel: Hi, and we are bringing to you another great episode of disabled lives matter and just before we went to break I I put a teaser out there, but it's not it's reality.

Nadine Vogel: That our guest today Millie Barrett has experienced cancer five times, while caring for a child, with a disability and now has written a book so norm i'm going to turn it over to you.

Norma: Well, you know millie, we really need to understand and would love to be able to share with our audience, how you did it five times. is it the same cancer, are they different cancers. What happened?

Millicent: Okay.

Millicent: No it's three different cancer, but I went through cancer five times the first one that I got diagnosed with was a blood cancer.

Millicent: The MALT Lymphoma for me is considered to be treatable, but it can come back time and time again and, for some reason it came back in 2008 and 2009. 2009 they thought they we're going to lose me because the lymphoma.

Millicent: was in my lungs and it was so bad that the day when I left work and didn't return um I had so much pain in my back and luckily my nephew.

Millicent: Had just had a baby, so he was next door, I was able to call him to go upstairs my house and get my breathing treatment, so that was the first cancer, then I end up having breast cancer and my doctor had said to me, because you had that cancer you, you are 10% likely to get another cancer.

Millicent: So that keep me on alert.

Millicent: I was very attentive to my body which everyone should do that if you have any changes in the body check it out.

Norma: mm hmm.

Millicent: Know your body that well.

Millicent: [cough] Sorry.

Millicent: and um.

Millicent: So I had a pain.

Millicent: One evening when I came home from working in my right breast and I just finished my mammogram.

Millicent: And they did call me back for an ultrasound and they came to the conclusion that it was just a cyst.

Millicent: [cough] I'm sorry something. is tickling my throat.

Millicent: It was a cyst.

Millicent: So I went to my doctor right away, I did not wait.

Millicent: When I went to him that's when we notice there was a mass on my breast.

Norma: Wow.

Millicent: And he made an appointment for me to go see the surgeon breast surgeon, I made the appointment and while we're waiting for that appointment my mom died.

Norma: Wow.

Nadine Vogel: Oh my.

Millicent: So I had to cancel that appointment head to Jamaica to bury my mom.

Nadine Vogel: Oh my gosh.

Millicent: Yes, and then, when I came back, I went through a full mastectomy they take a breath off and I tried for the reconstruction that didn't work, so I was doing well.

Millicent: After.

Millicent: The breast cancer and something interesting which I placed in my book, which i'll talk to you a little about three years later I got uterine cancer.

Norma: Oooh.

Millicent: Yes, which one of the medication that I was taking to prevent a breast cancer from coming back when I read that bottle, it said a side effect was uterine cancer.

Norma: Yes.

Millicent: But I had a full hysterectomy I had surgery I didn't go through chemo for that, but it was shortly after I had May.

Millicent: May was when I had the surgery, and then my nephew which is Velair my son now father died that June so those were the things.

Norma: That was like a roller coaster of life. circumstances.

Millicent: Yes, so when I used to talk to people about these things they said you need to write a book and i'm like write the book I used to have problem writing in school.

Norma: mm hmm.

Millicent: But when I got my when they lymphoma came back, and that was a struggle, because I had a girlfriend who said to me.

Millicent: Because if the doctor treat you so many times, sometimes these doctors, just like give up on you and I could not believe those weren't came through.

Millicent: Because the doctor like send me off to somebody else, and I was like Why am I going to that doctor that doesn't make any sense.

Millicent: And when I got to that doctor's office I kept the appointment because I had a relationship with that doctor, he said, why did he send it to me, and when he called his office, he was like.

Millicent: He's out on vacation I left that doctor's office and I came home and I start making phone calls luckily, for me, I had insurance that would take me across state line to get. care.

Norma: Good yes.

Millicent: Many people don't have that you know, so I called and I called like three different I call the lymphoma society, this time and they gave me this idea of doctors who take care of lymphoma and I want to put this in there before I go any further, if you have a cancer.

Millicent: Look, for the oncologist that specializes in your type of cancer. It's much better than going to a general oncologist.

Millicent: The doctor I was seeing first was a general oncologist so practically didn't know what to do so, I got to another hospital and they told me, I was going to get six treatments and praise the Lord I only got four and knocking wood until today i'm doing well.

Millicent: Like I told you, I moved to Georgia and start asking questions about my son So while I was being treated that's when I started my book.

Millicent: And it's like everything got revealed to me, I came up with the title, which is the Faces of Struggles, such as cancers are on the journey to God's Glory.

Millicent: So in my book it just didn't talk about cancer, it talked about divorce, because I was going through divorce, too and I call that I cancer too because it's like everybody was going through some form of struggle with marriages during that time.

Norma: And still are.

Millicent: I put a page in there about my son, because I said God must have a reason to have kept me and took his parents so God have a greater purpose for him.

Millicent: To keep me to keep leading him to where he needs to go, because I was the first one in my family got diagnosed.

Millicent: With cancer and since then my mom my dad my brother and sister in law, all died from cancer and i'm still here, yes, so I put that in my book, a page, let me see if I can find a chapter, that I still.

Nadine Vogel: You know, adding to all of his.

Nadine Vogel: you've lost your support system of your family.

Norma: Right, right.

Millicent: Yeah.

Norma: But the strength that you have and the determination and the will to continue to make sure that Velair had he needed to have to maximize his potential, despite what you were going through.

Norma: that's an added level of strength and courage and determination that you know truly has to have faith based situation because.

Norma: So many people today don't have half the challenges but give up on their children, give up on themselves and that's one of the things that we have to be so aware and try to see if you can connect with some of these people who lose hope.

Millicent: Yes.

Nadine Vogel: And whether and whether it's your.

Nadine Vogel: Religion or spiritual or anything that anyone believes in it doesn't even matter as long as it has the impact.

Millicent: Yes.

Nadine Vogel: Right, and it has the outcomes that millie that you have, because I, you have a big smile, you know people can see you, you have a big smile on your.

Nadine Vogel: Face. A big beautiful smile and and you know I can tell that you practice this mantra of life is good.

Millicent: Yes, yeah.

Nadine Vogel: And I think to norma to your point, you know people will have you know, an infection in their toenail and suddenly life isn't good.

Nadine Vogel: You know glass half empty half full and.

Norma: Definitely. It's perspective.

Nadine Vogel: Yeah Thank you that's the word I couldn't think of it. Perspective.

Nadine Vogel: That that i'm hoping that through this show you're giving everyone.

Millicent: Yes, that chapter about Velair I call it a special assignment I received from God.

Norma: hmm.

Millicent: I see it as an assignment.

Millicent: from God that.

Millicent: it's my duty and my place to make sure that he has everything he needs, and you know to cut to almost to the end.

Millicent: I was one of the person who was God for Covid because he was keeping me busy he has a busy schedule, he has work now he works two days a week is a working man and he loves it.

Millicent: He goes to work, two days a week, he goes to Bowling one evening he has writing one evening he has a church activity another he had a paint class I used to go to a placce for cheerleading.

Millicent: Whatever other Community activity, he loves to dance, he will dance, as long as the music is playing.

Millicent: And, not to mention Norma got me.

Millicent: Our connection the way norma and I met is.

Norma: Oh-oh.

Millicent: Yes we were, and then we have been friends, since that day.

Norma: He's an amazing model.

Millicent: Model.

Norma: An amazing model.

Millicent: That i'm still waiting to see him go on the world stage, because.

Millicent: That's where I think he'll really end up one of these days.

Norma: Yeah.

Millicent: He just loves it and then miss Sharon, let him do whatever he wants to do i'm trying to get him to do more.

Millicent: manly style walking straight down the aisle.

Norma: He does have a flare.

Millicent: He has a flare about it and they love it and he loves it he just and he loves to dress up so almost every Sunday he wears a suit to church.

Nadine Vogel: Wow.

Millicent: So I figured we could get suits to buy very cheap.

Nadine Vogel: um hmm.

Millicent: I go to the goodwill and get him suited out.

Nadine Vogel: Right.

Millicent: Like he has about seven different suits right now and.

Nadine Vogel: Wow. Isn't that amazing.

Millicent: He wears a suit Every Sunday to church and he loves when he received compliment about it.

Norma: Oh yeah they could tell when they looked and.

Norma: That's a lot of what we try to do like you said we tell the stories here.

Norma: On disabled lives matter and and hope that people can see that these communities that just like all of us that, just like everybody else, and we want our family members to live.

Norma: Their best life, just like we do and we got to do what it takes to make sure that happens because that's how we are, we are you know we have mothers were advocates, we are people who want to see see change positive for our community.

Norma: That's what this is about.

Millicent: What I realized is that.

Millicent: moving around the disability Community a lot of people didn't know a lot of stuff that are available.

Millicent: For them.

Nadine Vogel: Right.

Millicent: They like, how you know so much, but because I didn't birth, a child who was disabled I was gifted a child who was disabled.

Millicent: And like I told it's my responsibility for him to have the best life possible so I was going to meetings like once a week I had to go to meetings now because I kind of get what I need for him.

Nadine Vogel: Sure. Absolutely.

Nadine Vogel: Well Millie I just have to say, you know I know that that you feel very lucky.

Nadine Vogel: To have your son to have Velair but I gotta say I he's really lucky to have you he's really lucky, and I think that all of our listeners are better off because of hearing your story today.

Millicent: Thank you.

Nadine Vogel: So, unfortunately, we are out of time, I cannot believe the time.

Norma: It goes fast.

Nadine Vogel: I, but I just want to thank you.

Nadine Vogel: So much for for sharing your story for sharing about your book.

Nadine Vogel: and hopefully you'll keep in touch with us.

Nadine Vogel: And let us.

Nadine Vogel: know how things are coming along.

Millicent: Yes, well, thank you for having me, and now I can give you more of an update if anybody need information about the book.

Norma: Well give them the website real quick.

Norma: Was it.

Nadine Vogel: Right.

Millicent: It's on Amazon, but because I had to change publisher you have to get the one that is written by.

Millicent: lulu. Published by.

Millicent: lulu.com and you can go to that directly website lulu.com and get it.

Nadine Vogel: Okay.

Millicent: You can go to Amazon, but I rather you to lulu as you'll definitely find the correct one.

Nadine Vogel: At all thank you again millie and have a fabulous week.

Millicent: Thank you too for having me.

Nadine Vogel: Absolutely to our listeners.

Nadine Vogel: Thank you for joining us once again norma Thank you amazing co-host that I have and we look forward to the next episode of disabled lives matter bye everybody.

Norma: Be blessed everybody.

Millicent: Bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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