- 1 day ago
One Day in My Body - Season 1 Episode 6
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00:00Yes, I know, my leg is big.
00:03My lymphatic system is messed up.
00:06The fluid kind of like builds up in my body.
00:09It is hard to move around.
00:11I want to travel.
00:12What scares me, Mahagini, is that fluid going somewhere else.
00:17I was born without a jaw, but my wife fell in love with me.
00:22He can't get water in his trachea.
00:28I've been asked, like, are you real, is that a mess?
00:33I don't even know if I remember how to dance.
00:36It's like riding a bike.
00:37I don't know how to ride a bike, so thanks for that.
00:39Y'all make some noise for my friend Zahra.
00:43I know you really, really want kids.
00:46I'm not scared to have a child.
00:49Best believe I will travel out the country one way or another.
00:53Am I being foolish?
00:55Am I being stupid?
01:03The most popular comment I get is, are you wearing a mask?
01:09No.
01:10This is my face.
01:17Morning.
01:20Keep that tattoo.
01:21Okay.
01:24Got my stool in reach.
01:28My name is Zahra Ingersoll.
01:31I am 42 years old.
01:34I was born with something called Freeman Sheldon Syndrome.
01:44Layman's terms is called whistling face syndrome because my mouth is pursed together like you're
01:53going to whistle like that.
01:55I've been asked like, are you real?
01:59Is that a mask?
02:01Some of the things I'm just like, are you guys for real?
02:04Like, come on now.
02:05Like, come on.
02:06Have some common sense.
02:14It affects the way that my mouth is, the way that my head is shaped.
02:20My hands, they don't open all the way.
02:23My arms are kind of like double jointed.
02:31I had a feet amputation.
02:34I've worn prosthetics on my leg since I was 12.
02:39And I've been walking great ever since.
02:41My name is Zahra, and I'm Zahra's mother.
02:46Zahra is very active all the time.
02:50She likes leaving.
02:53I just want to do everything that I can do.
02:56I mean, I went to every single dance there was in high school.
02:59I never missed a dance.
03:01Even if I didn't have a date, I went.
03:10I love acting.
03:12It's like this weird thing that I literally sort of fell into.
03:15A friend of the family was head of the disability department with the acting.
03:21She took me on as a client.
03:24I auditioned for my first movie, the horror film.
03:28They pretty much looked me on the squad.
03:32Did a couple other movies.
03:34And then I also worked big, big music festivals where they have these like massive crowds of like 30,000
03:41people.
03:43And I never felt different when I was working these raves because it was all about love, unity, respect.
03:53It's like normally they would put you on display as like a circus character.
03:58But it's like now, instead of them doing that, I'm doing it myself.
04:03And I have control of how I want to be perceived.
04:16For the past couple months, I have been dealing with a injury to my knee that I sustained from my
04:28prosthetics.
04:39I haven't been able to wear my prosthetics for three months.
04:43It has been so hard because I am so dependent on everyone to pick me up and put me in
04:51the car and do this and cook this and do that.
04:54And it just makes me feel like, oh my God, I just want to do it myself.
05:00For her it was a nightmare.
05:02She thought that she couldn't walk.
05:04She's like a prisoner.
05:06Stay at home.
05:08She couldn't go anywhere.
05:10I'm just so tired of this.
05:12Honestly, I'm exhausted.
05:14Sick of dealing with that.
05:16I'm so over it.
05:25No offense to people in wheelchairs.
05:28I never want to be in a wheelchair.
05:31I'm in an acquaintance for about three days with my prosthesis doctor.
05:39And God willing, I will get to walk out of there on my own two feet.
05:47I'm just praying that I can wear them.
05:50Please let me walk out of there with me.
05:54Please.
06:03This is my leg.
06:05Let's see if I can show you better standing up.
06:08Let's see.
06:10Hey, y'all.
06:11How y'all doing?
06:12My name is Mahogany.
06:13I am 28 years old and from Knoxville, Tennessee.
06:17Because of my condition, I never thought I could roller skate.
06:20But check a bitch out.
06:22Hold on.
06:26Now I suck.
06:27I suck.
06:28But I'm out here.
06:29So what I have is called lymphedema.
06:40There's four stages of lymphedema.
06:42Mine's the last stage.
06:43Kind of like irreversible.
06:45Some people call it elephantitis.
06:48I mean, the main issues that's coming out of my leg is it feeling really heavy and really tight.
06:54It is, it is hard to move around.
06:57How big is your leg now?
06:58I just assume maybe a hundred so pounds.
07:08People only notice my leg.
07:11But yeah, like, it's my whole left side.
07:16It's my hands.
07:19My arms.
07:21It's like, when I suck it in, watch this.
07:25This is fluid.
07:26Are you supposed to put lotion on when your skin is still wet?
07:29I don't know, but I'm doing it.
07:35My life always revolved around my condition.
07:39What's up, y'all?
07:40I went pants shopping yesterday at the mall.
07:43This is how they fit.
07:44As you can see, they're really big on the right side where I don't have lymphedema.
07:51Trying to show y'all the pair of jeans that fit at Walmart.
07:55Those are a 26 wide.
07:58I gotta buy two different shoes.
08:01Majority of the time, they are men's shoes.
08:04Because men's shoes are the only shoes that are, like, really wide enough to go over, like, my left foot.
08:11If I, like, cut myself, I can get, like, infections.
08:15So my leg will leak blood and will leak fluid, too.
08:18Today, we're going to my physical therapy.
08:27If you don't wear your wraps, you work against yourself if you wind up the tree.
08:32It can become really dangerous.
08:34Yeah.
08:41My current situation is work, school, eat, sleep, repeat.
08:51And I'm like, oh, I'm lonely now.
08:54Okay.
08:55But, yeah.
08:56Mama didn't raise no bitch.
08:57She didn't raise no quitter.
09:01Can't walk fast.
09:02So if I'm about to get ready to go somewhere, I have to leave maybe, like, extra early.
09:09One time, I did feel bad because it was a school trip.
09:13And everybody would be, like, so far ahead of me.
09:16And I'd be, like, back here.
09:18I'm like, oh, my God.
09:18Like, I'm holding the group down.
09:25I'm at an age right now where I'm really impatient.
09:29I just want to chase my dreams.
09:33I want to travel.
09:35Would it be easy with my lymphedema?
09:39No.
09:42Now I got a passport.
09:43I'm really, I'm ready to fill this bitch up.
09:52I got this condition from my dad, who I haven't met.
10:01She didn't start walking until she was three.
10:04Only thing that would hurt my feelings is that I knew that she was going to have to deal with
10:08people talking about her.
10:09And I knew she was going to have to deal with people staring at her.
10:13I just did a lot of praying.
10:15That's the only thing I can really tell you.
10:18It's just to give her strength.
10:20When I was younger, we were kids, fifth grade.
10:23I know they asked me, like, if my pee was normal.
10:25Like, I don't know if they thought I was, like, some radioactive, like, mutant when I was a child.
10:30But I was like, yeah, it's yellow like everyone else.
10:33This girl caught me in the hallway and was like, there go that deformed bitch right there.
10:40I am resilient, but I am human.
10:42So I have my days where I'm down.
10:44But I think now that I'm older, I know how to get back up and keep moving.
10:54One of the fears of the lymphedema is the fluid traveling, like, to my heart.
11:00And that is a fear of, like, my families.
11:09I'm one of those hope for the best, but prepare for the worst.
11:13I just hope my family doesn't freak out too bad when I tell them I want to go out and
11:20start traveling.
11:22And sometimes I do second guess myself, like, am I, am I being foolish?
11:27Like, am I being stupid?
11:32I was born without a job, something that doctors had never seen before.
11:37But my wife fell in love with me.
11:49My name is Joseph Williams.
11:52ID 45 in April.
12:01I have a tube in my throat.
12:04This is called a tracheostomy.
12:07It helps me to breathe better.
12:16I can't speak.
12:18I don't have a jawbone.
12:21I have no bottom teeth.
12:23My tongue is underdeveloped.
12:25And I have one roll of teeth.
12:28I can't eat through my mouth.
12:46I was born with a sealed windpipe.
12:50The only way for me to eat or drink, is by pumping food directly through a port in my stomach.
12:56The g-tube has a small end on it.
12:59So I have to make sure that the food is small enough.
13:03I like to eat mashed potatoes.
13:07Or anything that's soft.
13:14Can I taste it?
13:15No.
13:17They tried to make me an artificial jawbone when I was little.
13:21But my buddy rejected it.
13:23But I've been like this for a long time.
13:26So it doesn't bother me.
13:37Based on his parents, most people will, you know, be like, oh, that kind of thing.
13:41But he's more confident in himself.
13:44There were some times where Joseph had some difficulties.
13:48Just being accepted and being okay.
13:53Good set, brother.
13:54Good set.
13:55And then to find him saying to me, hey, I think I found the love of my life type of
14:01thing.
14:01And then meeting her, like, oh, man, this is awesome.
14:05How many pancakes do you want?
14:08You want two?
14:10My wife fell in love with me.
14:14I still have it.
14:19Don't show these health shoes on there.
14:24He has to remove his breath ache when he takes a shower.
14:29He can't get water in his trachea.
14:31Or else he'll cough it up.
14:37Dating was very, very hard.
14:39People have looked at me and they've written me off.
14:43I remember the first time I met Joe.
14:45He was talking to other coworkers.
14:48And now I see him talking to them with his phone.
14:50And so I was like, oh, that's interesting.
14:53And then he introduced himself to me.
14:56He's very grounded, down to earth.
14:59And he has a sense of humor.
15:01And so that's what attracted me to him.
15:05When Joe asked me out, I didn't want to go out with him.
15:08Because I was always about image.
15:11It took some time for her to get comfortable with me.
15:16Which I get it.
15:17No one expects a person to be born without a jaw.
15:22Oh, it's a video?
15:24My bad.
15:27We're way too extra.
15:29We're way too extra right now.
15:32It's nice.
15:33It's a nice little stroll.
15:35We like trying to be born on a like romantic night out.
15:41Get cute, take pictures.
15:45I started to love Joe when he told me more about his story.
15:50It was just like, it hit me so deep.
15:52It felt like I knew him all my life.
15:54We bonded that way.
15:56And I know we do have a beauty spectrum.
15:59I'm not oblivious to that.
16:01I overlooked him not having a jaw.
16:03It was hard at first.
16:05So I do think people are afraid of what they don't understand.
16:09Social media doesn't make it any better.
16:15Of course, on social media, you get like weird questions, personal questions,
16:19stuff that you don't want to really talk about.
16:21And I don't answer it.
16:23When people talk to me instead of talking to him, it's offensive.
16:28Yeah, because he could hear and he could respond.
16:33And did I ever ask for pity for how I was born?
16:37I haven't met a person on this earth like Joe.
16:45I was born April 1st of 1981.
16:48They told me that my birth mother was in shock.
16:52That she did not believe that I was born like the way I was.
16:58My birth mother would come to visit me, you know, on and off.
17:03But money got to be tight.
17:05And so she had to stop coming over.
17:09And then I stayed at the hospital for three years.
17:14And that was my home.
17:25My adoptive parents.
17:27They were there for another kid.
17:30I guess he fell in love with me and said to his wife.
17:33I want to adopt him.
17:38I definitely want to have kids.
17:41We still got to talk about it.
17:43We still got some things to work out before we talk about kids.
17:46I just still want to take my time with that.
17:49I know you really, really want kids.
17:51And I'm kind of like, well, we could just have a dog.
17:55Kids will keep you young.
17:58You believe that?
18:02I just still want to take my time with that
18:04because I'm going back to school for psychology.
18:09And I want to have my own practice.
18:12But right now, I'm worried about how we can make that happen.
18:23I haven't been able to wear my prosthetics for three months.
18:27The doctor has given me this little compression sock
18:34that I have to wear between now until Tuesday,
18:38which is when I go back for another appointment
18:42to see if, like, the shrinker sock
18:46has helped with the swelling that's still there.
18:56I am putting so much more pressure
19:01on the bottom of my stomachs.
19:04And I have hardwood floors in my house.
19:09And it's just becoming go-door.
19:13I'm so ready to be able to wear my prosthetics again.
19:18You make the best of everything. Best egg.
19:21Oh, thank you, honey.
19:27There's nothing like your mom's home cooking.
19:36I'm originally from Tehran, Iran.
19:40But I moved to the States when I was about a year old.
19:47When she was born in the hospital,
19:50my mother and my husband didn't show her to me.
19:54I said, I want to see what's going on.
19:58Because she has no mouth,
20:00they have to put the tube on her nose
20:03and then feed her.
20:04And I get really upset.
20:08And when they did the surgery in Iran,
20:12she gone to coma.
20:14We thought that she's not going to come back.
20:18But eventually, a miracle.
20:23They didn't have all the facilities in Iran.
20:26And the doctor told me it's going to be very dangerous for her.
20:33We thought it's a better option for her to bring her in the state,
20:38if it's possible.
20:40Those visas don't last very long,
20:42so she couldn't stay here very long.
20:45She obviously wasn't going to take me back to Iran.
20:53I had to put her in a foster home.
20:58She was very small.
21:00She was one and a half years old.
21:02It was very hard for me.
21:04I didn't want to leave her alone,
21:07to some people that I didn't know.
21:10But I was sure that if I take her back to Iran,
21:13then maybe she died.
21:17It was very difficult for me.
21:20But because of her, I did it.
21:24You know, that takes gumption to be able to leave your only child
21:30and fly across the United States.
21:33I didn't get to see my mom for, like, six years after that.
21:36So, I'm sure it was agonizing for her.
21:42Right now, I've been stuck in the house for so long.
21:45I'm so tired of it.
21:48If it's, like, tissue damage, then, unfortunately,
21:51I probably will ask you not wear them.
21:55Come on.
21:56Not wearing at all?
21:58And then I'm thinking, like, what if it's something worse?
22:01What if I need surgery?
22:03Uh-huh.
22:04That will be bad.
22:06I know, baby. I hope it's nothing serious.
22:18I really do not know what I'll do
22:21if my knee doesn't heal
22:24enough for me to wear my legs again.
22:28I'm in the car, on the way to the appointments,
22:32my service.
22:34Here goes nothing.
22:35Okay.
22:43We're going to see if it works for me to get my legs on here.
22:48Let's go.
22:50Let's go.
23:01I've never been told that I need to amputate my leg,
23:05so I'm not going to, especially if I don't have to.
23:09I asked what would happen if my leg was amputated,
23:15because I was getting a lot of comments about it,
23:16and she said the fluid would just go to my stump, so...
23:20A lot of people, they think if she had her leg cut off,
23:23that that's just going to solve her health problems.
23:26No, that's just going to bring on more health problems.
23:30You know, I could lose my child over a physical look.
23:35No, we're not doing that.
23:37I know my family is just overprotective over me because they basically see me my whole life.
23:47And they know how difficult life has been for me in the past.
23:53When I was growing up, my life always revolved around my condition.
23:59I ain't going to lie, I was a depressed little kid.
24:03The kids didn't really bother me so much.
24:05It was more the adults.
24:07They would just stare.
24:10I got the habit of, like, disassociating.
24:13I can block out damn near anything.
24:17The things people say are kind of the same.
24:19Yes, I know. My leg is big.
24:22What else?
24:23Is that it? Oh, okay.
24:25Well, move it along.
24:27That's all I can say.
24:30Oh, this is cute.
24:32Come on, best friend.
24:36I have a condition, and I'm not able to really wear regular shoes.
24:42Is it okay if I just wear my tennis shoes?
24:45Oh, I like this.
24:47I just hope my family doesn't freak out too bad when I tell them I want to go out and
24:55start traveling.
24:56And sometimes I do second guess myself, like, am I being foolish?
25:00Oh, shoot.
25:01I can't live my life miserable.
25:04Let's see.
25:06Come on, give me a strike.
25:08I love Japan. I'm not going to lie.
25:10Just call her and say, hey, Mom, I'm going to Japan.
25:12She's like, what?
25:14Like, it's so different over there.
25:16Like, I don't know how to explain Japan.
25:19I know a lot of people like to go for, like, the anime stuff.
25:24Oh, my God.
25:26So what I've been told is that gravity pulls, like, the fluid down, so I'm not going to lie.
25:33That is a fear of, like, my family's.
25:35What scares me, Mahogany, on a serious note, is that fluid going somewhere else.
25:42I couldn't imagine this world without you, baby.
25:45And, you know, just knowing that fluid can go anywhere, that's, like, it bothers me.
25:51Growing up with Mahogany, we always were worried for her health.
25:55No matter how far she travels.
25:57Of course, I'll be a little sad because we've always lived close with each other.
26:00But I'd be supportive, and I'd, you know, just check up on her, call her.
26:04LA!
26:06Oh!
26:07I know my family is just overprotective over me.
26:11But best believe I will travel out the country one way or another.
26:22So you're really, really hungry, yeah?
26:25People think that I'm going to run out on him, and he's just somebody I'm using for money.
26:30And I'll be like, well, Joe doesn't have any money.
26:33People think I'm his caretaker.
26:36Like, well, why would you marry someone you're going to have to take care of?
26:39He feeds himself.
26:41He hardly goes to the hospital.
26:44And, um, I don't know, everything else is working.
26:49Everything else is working, okay?
26:53So...
27:09That looks so good.
27:11First posting to getting out with you.
27:14Aww.
27:16We needed this.
27:19Look, I didn't even drink all the man yet.
27:21I didn't even drink that much.
27:22And I'm already...
27:27We still got some things to work out before kids.
27:30I feel like Joe does push me to take care of things.
27:33Because I'll, like, lag and be like, oh, I got time.
27:35And then I'll be 80 years old and still didn't do it.
27:39You not scared to have a child?
27:42You want a boy or a girl?
27:44You want a girl?
27:45I can tell.
27:48You know how I can tell you want a girl?
27:50Because you told me you had a dream.
27:53That we had a little girl.
27:54And it was like, she was so pretty and...
27:58I had a little anger towards my birth mother.
28:01To know you were rejected for something you had no helping hand in, that hurts.
28:07No matter what my child looks like, my child is not going to be left without a dad and mom.
28:13Does this say that I am going to be better than my birth mother?
28:17Yes.
28:18What do you think we'll be next year?
28:21Just work together. I'm getting a place together.
28:24Yeah.
28:24A nice house.
28:27And a kid.
28:33You said kids with an S. I said kid.
28:39Just one, yeah.
28:41Because we're too old for too many kids.
28:42You don't want to wear yourself down.
28:45We do feel like we bring out the best in each other.
28:48I think God did send me, Joe, to get me out of that superficial image.
28:54Just showing me what's important in life.
28:57You know, not status.
28:58Not money.
29:00Not looks.
29:02But being a good person.
29:06I would like to toast to the future.
29:09I am praying we come out of that.
29:11And we will.
29:12We will.
29:20I am in the doctor's waiting room.
29:28I'm kind of a little bit scared.
29:28What if I'm never going to be able to walk again?
29:34I am in the doctor's waiting room.
29:38I'm kind of a little bit scared.
29:43I hope that swelling has gone down.
29:45What do you do?
30:00there he is right on schedule we're gonna try this on
30:08all right so we made some adjustments for where you're getting that pressure on your knee hopefully
30:12it's up here of our problems let's go put your sock on first yeah i have no doubt you've been
30:19laid up for a little while with that i guess we're going to ruin my knee i had to have
30:25like minor
30:25adjustments over the years but i never had anything like serious as i did this time oh
30:33that hurt i didn't press all right let's go and stand up here
30:39oh that looks a lot better it should continue to heal but it is going to take some time
30:50well just from seeing you last time your swelling has went down a lot i can tell your limb looks
30:55a
30:55lot better than it did let's see you walk one more time here
31:01just looking at it you're much less swollen today than you were last time so keep your feet down i
31:06think two weeks from now it's going to hopefully be completely better we'll find out all right thank
31:10you all right take care of yourself i was like thank god for the most part it's healed i can
31:16at least
31:17wear my prosthetics now it's not too painful i got to my acquaintance and as you can see i am
31:29walking
31:32i got my feet so the doctor said that i need to ease into wearing them because we want to
31:46be careful
31:47that i don't re-injure my knee but for now i have them on and i'm walking and i'm so
31:55happy
32:06let's go let's go to the beach
32:13isn't the beach so pretty oh look at people like they are giving me no problems today
32:20i just feel that girl's human because i've been like depressed because i just haven't been able
32:29to walk and i don't know i just feel not anymore not anymore because you i know walking
32:39oh look at the view oh yeah who knows what kind of life i would have had in here on
32:46i probably wouldn't analyze if like my mom had not made that choice 40 something years ago to
32:53bring me to the states because i would be dead i really would my mom definitely made the right choice
33:00i mean i i thank her for it my goal i guess right now is to get to a place
33:08where my knee
33:10is completely better and i don't have any issues with it cheers cheers
33:23we are ready to get coffee coffee time coffee time jamie is my best friend i met jamie
33:33in 2020 during covid times i downloaded tiktok started making videos and i started to develop a
33:43following instantly we just like started texting we exchanged numbers and facetimed and it just took
33:50off the difference that i've experienced coming out and being gay versus her experience and being
33:56different with her friedman sheldon syndrome you bond with that person because of there's something
34:02different so i said i really want to come out and meet you and she was like okay so i
34:07booked i booked a
34:08ticket and it was only supposed to be for a couple weeks i never went back home and i made
34:16florida
34:16my equipment at home we're going to cabaret tonight oh my goodness now i don't have a brush but i
34:25do have
34:25lunch i don't think i need one hopefully it doesn't fry oh my god right watch my hair fry off
34:31right
34:32okay that's good right jamie he's an amazing person he's helped me a lot it's just been really
34:40hard because we haven't really been able to spend time together because i haven't been able to walk
34:49you're excited yes this will be interesting my mom had no idea what a drag show was i would try
34:59not
34:59could do that a way to explain it and then she kind of looked at me with like this perplexing
35:04look
35:05i'm excited i'm excited for her to talk her drag show cherry we'll see we'll see you later right she'll
35:13tell me later like i've traumatized her yeah just got done washing my ass as you can tell and i'm
35:28about
35:29to go ahead and get started on my makeup
35:39now when it comes to traveling my leg can be issue as in like of course walking through the airport
35:48my leg is very heavy i do get tired we just gonna keep pushing and do the best that we
35:56can
35:58do the best that we can do to make our dreams come true only thing i could do now is
36:03just let her go
36:04she knows how to handle herself she's gonna achieve all goals you best believe that
36:13y'all i'm in the airport this is really real like i'm really finna go all the way out the
36:20country for
36:20the first time y'all i'm in the airport about to go to japan this is really real like i'm
36:36really finna go
36:37all the way out the country for the first time damn
36:53i love japan the temples the shrines anime and ramen and cherry blossom i know just like once in a
37:03lifetime thing i will go back japan is like so pretty and it's so fun out here the only thing
37:10is
37:11like you gotta walk a lot when i say my feet were killing me the first couple of days
37:21but i'm grateful i want to trade this in for the world i can say i finally made it to
37:29japan
37:31i did get stared at a lot while i was in japan but it's like i'm used to getting stared
37:37at with my
37:38lipidema so that didn't really that didn't really bug me
37:45the future girl i'm gonna just do me i'm gonna just do me
37:54look at us i know ready for this night i think so you feel cute i feel cute
38:01okay turn to the other side
38:11i'm super excited because i've been down for the count for the past three months i've just not been able
38:17to
38:18go anywhere so it's kind of like my coming out party i guess you could say
38:28you guys are ready i'm excited
38:30cabaret hello
38:44how you doing out there y'all good
38:49this is going to be an unforgettable night wow cheers
38:57good how are you i've been stuck at home because i had a knee injury so it's going first night
39:06out in
39:07like three months now so like you're so glad you're doing better i'm ready all right you guys
39:12have a great show are you ready for party
39:14yeah
39:20it was so much fun
39:26my mom she loved it i could see it all over her face i don't know when i started because
39:33i have a feeling my mom's going to be like wanting to go to like all these drag shows now
39:38so i might have created a monster hey baby what's your name
39:44how many is this y'all make some noise for a violent day
39:46y'all make some noise for my friend zora
39:54i saw you i saw you from up there you was dancing over there girl she was getting it now
39:58she was giving you a show i needed this night like seriously needed this night i just echo
40:09human again after like me we are so happy we're here with us i hope you're having a great time
40:15i haven't like danced on my feet in like months i loved it i loved it when i see that
40:25she dancing
40:26it's so enjoyable and being with her makes me very happy we only had a wonderful time thank you so
40:33much for joining us thank you guys i know i look different i'm fully aware of that but if people
40:40took
40:41the time to get to know me they would see that i'm like literally no different than than they are
40:54you're not scared to have a talent
41:00so yeah children are in the works too
41:09of all i thank god for my wife for her love her patience and her presence in my life she
41:17sees me for
41:18who i am not for what i lack she's my blessing and i don't take that for granted not for
41:25a single moment
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