A Mom with Butterfly Skin (Open Wounds Cover Her Body)

追加: 2026-05-15

[00:00:00]- [Chris] Lindsey, are you ready for the interview?

[00:00:03]- Yes, sir.

[00:00:04]- [Chris] What is your diagnosis?

[00:00:06]- I was born with Recessive Dystrophic Epidermolysis Bullosa.

[00:00:10]I am missing the gene that binds the skin together, so it causes my skin to be very, very sensitive and thin, and it shears off easily, so I get open wounds and blisters that have to be wrapped with special bandages that are made for people with my condition.

[00:00:28]Over time, because of the scarring that the wounds cause my fingers fused together.

[00:00:37]So I really only have use of my left thumb.

[00:00:42]- [Chris] What age were you when they fused together?

[00:00:44]- I don't never remember them being free.

[00:00:48]- [Chris] As you know, I've met many people with EB So when you reached out to me and told me the type of EB you have and also that you're a mother, I just had to come and meet you.

[00:01:02]Yes.

[00:01:03]What is your baby's name?

[00:01:04]- Everly Faith. - How old is Everly?

[00:01:07]- She is almost 2.5 years old.

[00:01:10]- [Chris] What's it like to be a mom with EB?

[00:01:12]- I mean it's hard to answer because I don't know any other way, but I mean of course, it's challenging and hard emotionally and physically sometimes, but I try my best every day to be what she needs.

[00:01:27]Sometimes I feel like I failed, but- - [Chris] Why do you feel like you fail sometimes?

[00:01:34]- Just wish I could be better for her and I don't never want anyone to think that I'm not capable or good enough for her.

[00:01:43]So I guess that's why I judge myself to think that maybe I'm not doing a good job, but she's my whole life, 24/7.

[00:01:55](gentle acoustic music) - [Chris] Welcome to "SBSK."

[00:02:00]We believe that everybody has a story that's worthy of being heard.

[00:02:04]When we listen to one another, the world becomes a closer place, and we all benefit together.

[00:02:11]So without hesitation, let's meet today's friend.

[00:02:18]Did you always want to be a mother?

[00:02:20]- Yes, I always dreamed of being a mama.

[00:02:23]But I didn't think it would ever happen.

[00:02:26]- [Chris] Why not?

[00:02:27]- Other kids go to school and they have boyfriends and they go to prom and dances and they hang out and go to bonfires and stuff on the weekends.

[00:02:40]I never got to do any of that.

[00:02:44]So I didn't never think I would have a relationship for that.

[00:02:52]And I for sure didn't never think that I would get to have a baby.

[00:02:57]- [Chris] Are you a single mother?

[00:02:58]- Yes, I am.

[00:02:59]- [Chris] What is it like being a single mother with EB?

[00:03:03]- It is definitely challenging and hard, but it worked out the way that it needed to.

[00:03:12]And we are both better off the way it is.

[00:03:16]He has never been involved in her life.

[00:03:19]- [Chris] When you first got pregnant, was the intention for the father to be in the picture?

[00:03:26]- Yes.

[00:03:27]We were together.

[00:03:30]I was trying to get pregnant.

[00:03:33]We were both trying and agreed that that's what we wanted to happen.

[00:03:39]But things just didn't work out.

[00:03:42]And he is not in the picture.

[00:03:44]He's not part of her life.

[00:03:46]He has never met her.

[00:03:48]I'm very self-conscious of myself and also self-conscious about people thinking because I have EB and because I have to use a wheelchair that I can't be a good mother.

[00:04:03]- [Chris] Tell me about your childhood.

[00:04:08]- I have two older half brothers.

[00:04:11]One is 10 years older than me, one is 11 years older than me.

[00:04:15]So most of my childhood, well, all of my childhood I was alone.

[00:04:21]I didn't go to public school, I was homeschooled.

[00:04:26]And it was just me playing by myself with my mother.

[00:04:33]And my father was a, they were together, he was in the home, but he is a very bad alcoholic.

[00:04:44]I no longer have any contact with him.

[00:04:47]In 2022, my father killed my brother, his son.

[00:04:54]And he only went to jail for 16 months, but now they're overturning it to try and charge him with his murder.

[00:05:05]And I always begged my mother for us to move and leave, but she didn't think she could live without him helping financially.

[00:05:16]So, and then after that, the relationship with my mother has always been tricky.

[00:05:23]And I don't want to say a lot about her on camera because I still talk to her every day and it's a very toxic, narcissistic relationship.

[00:05:32]- [Chris] So often, when I'm interviewing families, it's often very supportive families, and I love that, I think it's wonderful.

[00:05:40]And there's a bit of a selection bias, right?

[00:05:42]Because people reach out to me to come to their home and interview their kids, so it has to be parents who are typically very- - Very proud.

[00:05:49]- [Chris] Very proud, very involved, they want the world to see their kid.

[00:05:52]But I also think it's important for the world to know there's a lot of kids with disabilities who don't, who are not fortunate enough to have those types of families.

[00:06:01]So what was it like growing up in a family who really didn't talk to you about your disability?

[00:06:10]- Lonely.

[00:06:17]I felt like the odd one out.

[00:06:20]Just because I feel like maybe I could have made their life easier if I was... Maybe things would have turned out different for everybody if I was not, if I didn't have EB.

[00:06:41]- [Chris] Is that something you contemplated often growing up?

[00:06:45]- Yeah, because it was kind of like, it's easy for other parents to break up and get divorced when things are bad, but... I'm sorry.

[00:07:07]I'm sorry.

[00:07:12]- [Chris] Do you want a tissue?

[00:07:16]- Can you get me a paper towel, please?

[00:07:18]Sorry, what was your question before that?

[00:07:22]I feel like maybe their lives would have turned out better.

[00:07:25]Maybe my mama's life would have been better and she would be different now if she was able to leave the situation and not have to worry about that I was still going to be getting all the bandages and stuff that I needed because, you know, back then it wasn't like it is now where you can get it through the insurance and stuff, like they paid out of pocket for stuff and he did.

[00:07:55]My father, that was the only way he was ever a father was financially.

[00:08:04]Even though he was still in the home, he was never a father to any of his kids.

[00:08:12]And maybe I feel guilty that she could have had a better life.

[00:08:21]- [Chris] Was having your daughter a way for you to kind of end the generational trauma?

[00:08:27]- That is my ultimate goal.

[00:08:30]Yes.

[00:08:31]- [Chris] Tell me about that.

[00:08:34]- She is my chance at... (sighs) I don't know how to say it.

[00:08:43]I want her to do everything that I didn't get to do.

[00:08:47]I want her to have every opportunity to do whatever she wants because I never got to do anything.

[00:08:57]That's a light.

[00:08:59](Everly babbling) Yeah, they're pretty.

[00:09:02]- [Chris] Is she at the babble stage?

[00:09:05]What's that like for you when you see her hit a milestone?

[00:09:09]- Oh my goodness.

[00:09:10]It's like I'm hitting one or two with her.

[00:09:14]She is, it just makes me feel like I'm doing something right.

[00:09:20]When I was little and, I mean, I'm 31 years old.

[00:09:25]So, imagine 25 years ago, the world was a lot different than it is now, I think the world is more accepting of people that look different than way back then.

[00:09:41]But someone would ask like in Walmart, they would come up to my mother and say, "What happened to her? Did she get burned?"

[00:09:51]And my mother would just shut down which would make me shut down and say, "We don't talk about it.

[00:09:59]Nothing's wrong with her, we don't talk about it."

[00:10:03]- [Chris] How did that impact you?

[00:10:07]- For, I would say for a long time, but I mean, I guess I still have this feeling that I was ashamed of myself.

[00:10:17]Because something was wrong with me that my mama didn't want to explain or talk about and that it made her feel defensive.

[00:10:29]And I was embarrassed of myself and I didn't wanna know or see anyone else with my condition, or talk to anyone with my condition.

[00:10:39]I just completely, I mean, obviously, it was my day-to-day life, but I didn't want to think or talk or see it anywhere else.

[00:10:49]- [Chris] I hope you don't mind me sharing that in the weeks leading up to this interview, you told me through text message multiple times how nervous you were.

[00:10:57]And then when I walked in the door, it was the first thing you said, how nervous you are.

[00:11:01]So, even today are you nervous to talk about your condition from those, and it might be caused by that early childhood memories?

[00:11:10]- Yes.

[00:11:11]I'm scared of what people are going to say in the comments and stuff.

[00:11:17]I'm very self-conscious.

[00:11:19]- [Chris] What do you hope people say?

[00:11:24]- I want people to be proud of me.

[00:11:28]I want everyone to be proud of me.

[00:11:31]- [Chris] Tell me about some of her interests.

[00:11:34]- Lately she's been watching Sophia the First and she loves Barney.

[00:11:41]And she loves to sing and hold hands when Barney sings the "I love you, you love me."

[00:11:46]♪ I love you, you love me ♪ ♪ We're a happy family ♪ - [Chris] What's the rest of it?

[00:11:55]♪ With a great big hug ♪ ♪ And a kiss from me to you ♪ ♪ Won't you say you love me too ♪ Where did Minnie go?

[00:12:03]- Minnie, she's in the floor, can I have a kiss?

[00:12:07]Give me a kiss, give me a kiss.

[00:12:12]- [Chris] Everly, do you want me to hand you Minnie?

[00:12:15]- Yeah. - Hi, I'm Minnie!

[00:12:18]- There you go.

[00:12:19]- [Chris] As a person with EB, what was it like giving birth?

[00:12:23]- It was scary, a lot of talk leading up to it about, you know, what could happen, and a lot of precautions were taken to make sure that my skin wasn't hurt or anything during my delivery, but I couldn't have asked for a better outcome of my C-section.

[00:12:47]It went perfect and seeing her was the best moment of my life.

[00:12:52]When they raised her over that curtain, that was my whole purpose.

[00:12:58]She is my whole purpose.

[00:13:00]- [Chris] Does Everly ever unintentionally cause you wounds?

[00:13:05]- Sometimes, but I try not to say nothing about it, or I don't want her to think that she hurt me, or even when I tell her, you gotta be easy with mama, and I'll say like, ow or something, and she'll pat me and say, okay, you okay?

[00:13:30]Wait don't do that, you're a lady.

[00:13:33]He don't wanna see your belly.

[00:13:36]He don't wanna see your belly.

[00:13:38]- [Chris] What are some of the most important lessons you hope to teach Everly?

[00:13:42]- What I wanted to say first gonna come off... Maybe you can help me not to have to depend on anyone, but especially a man, like be your own, be successful, not have to worry about nothing.

[00:14:07]Independence, I guess is what I'm trying to say that didn't come out right, but I want her to be independent and outgoing and loving and have everything that she dreams of - [Chris] Like Minnie.

[00:14:28]- And determination.

[00:14:30]- [Chris] So Lindsey, you are here with your chosen family.

[00:14:35]All these amazing women. Tell me about them.

[00:14:42]- I just couldn't ask for better people.

[00:14:45]This is my aid, caregiver, sister, friend.

[00:14:51]- How did you two meet? - Through TikTok.

[00:14:54](all laughing) - How did that happen? - I was doing TikTok live and she started commenting and we started talking back and forth and started texting and talking every single day and FaceTiming and then her and her mom invited me and Everly for 4th of July weekend and we kinda never left.

[00:15:24]And just made our home here.

[00:15:26]- [Chris] How far did they live from where you were at the time?

[00:15:29]- Three hours.

[00:15:31]- [Chris] How did you make that commute?

[00:15:33]- They came all the way to where we lived to pick us up and take us back home with them.

[00:15:40]And they did that about every week, for three months?

[00:15:49]Until I packed up my apartment.

[00:15:54]Well, until I got my apartment here.

[00:15:56]- [Chris] What inspired you to go out there and get her and drive her here and let her see what life is like over here?

[00:16:03]- Well, she called one night and said that she was lonely and she really didn't have anything that she could get out and do, people to get out and do things with and it was just her and Everly.

[00:16:15]So, I invited her over and I said, I remember my mom talked and told her if it wasn't weird to her for some strange people to invite them over, we would like for them to come down and celebrate the 4th of July with them just to get them out of where they were living at the time and get them some interaction outside of the house.

[00:16:34]- [Chris] Tell me about your caregiver.

[00:16:37]- She is an amazing blessing and it just, it couldn't be more perfect because she wasn't happy where she was and I needed someone that could be there for me whenever.

[00:16:53]And we just fell into place with each other.

[00:16:56]- [Chris] Megan, what was it like for you when you first met Lindsey?

[00:16:59]- It was a blessing to get to meet somebody as strong and well-powered as she is.

[00:17:04]- [Chris] When did you realize that this is somebody you wanted to be close to?

[00:17:09]- The first time I met her.

[00:17:11]- [Chris] What's it like knowing that you are giving Everly a loving environment to grow up in?

[00:17:21]- It's like I get to fix it all.

[00:17:24]No matter what I've... Everly please.

[00:17:27](Everly babbling) I reckon.

[00:17:31](baby babbling) - [Chris] I think she agrees.

[00:17:34]- Yeah.

[00:17:35](baby babbling) - What was the question again? I'm sorry.

[00:17:40]- [Chris] What it's like to know you're giving her a loving environment to grow up in.

[00:17:44]And would you mind introducing the person who just helped you out.

[00:17:48](Renita laughing) - This is my friend Renita.

[00:17:52]- Hi, Renita. - Hi.

[00:17:55]- [Chris] Tell me about Renita.

[00:17:57]- She's one of the other family members that we found when we was adopted by our new family.

[00:18:10]- [Chris] Tell me about how you created your own chosen family.

[00:18:14]- I didn't create it.

[00:18:17]God did.

[00:18:18]- Kind of got lucky that way, didn't you?

[00:18:19]- I just, God orchestrated all of this and brought the people that we needed in our lives.

[00:18:26]- [Chris] I know that you are the adopted daughter and Everly is the adopted granddaughter.

[00:18:32]Is everybody else here related biologically?

[00:18:37]- Everyone but Renita.

[00:18:38](all laughing) - She's the odd, we're the odd ones out.

[00:18:43]This is Megan, and that's her mom.

[00:18:47]And that is her sister.

[00:18:51]And this is their mom.

[00:18:55]And I'm her mom.

[00:18:57]Since we've moved here, she has just blossomed into the most sweetest, sassiest little girl ever.

[00:19:05]- [Chris] And you told me that was a big part of you moving here, is you wanted to surround her around positive, loving people. - Yes, and I didn't want to, I didn't want anything from where we lived before to hold me back emotionally while raising her.

[00:19:23]I wanted to have somewhere fresh and new where nothing was like, we didn't have to worry about going out in public and me seeing a person that had caused trauma to me.

[00:19:39]- [Chris] What was it like moving hours away from everybody you had known your whole life and starting a new life as a person with EB?

[00:19:48]- It was, I got a lot of hate and backlash from people that claimed that they supported me and loved me and my daughter.

[00:20:02]I got a lot of hate from it, my decision, and I was cut off from people.

[00:20:13]But I had always felt at peace about it.

[00:20:18]Like I didn't ever think am I doing the wrong thing?

[00:20:21]I believe God was leading me and knew that I needed to get her away from there and just start our life.

[00:20:32]- [Chris] Tell me about everybody's role within Everly's life.

[00:20:35]- Well, her and Megan's relationship is a typical Auntie, (group laughing) Auntie niece, she teaches her all her bad habits and lets her gets away with everything.

[00:20:48]Nana's her favorite.

[00:20:49]Well, I can't say Nana's her favorite.

[00:20:51]- Yes, she can.

[00:20:52](all laughing) - [Chris] What did you think the first time you met Lindsey and Everly?

[00:20:58]- They were kind, sweet, lovable, especially Everly.

[00:21:05](all laughing) - She just, she's somebody that you just can't help but love.

[00:21:14]- Their whole family just welcomed us, and I have never had so many people in my life as I do right now.

[00:21:22]And the fact that my daughter gets to grow up with all these wonderful people is just the best blessing.

[00:21:31]And I was fortunate enough to get a call saying that I got the apartment that I really really wanted and God just worked out everything.

[00:21:40]- [Chris] As you met everybody here, did you teach them about EB?

[00:21:46]- Yes, of course that was a big topic.

[00:21:52]When we came, when they came to get us the first time Before we... before I decided that it was a good idea to come.

[00:22:03]I was hesitant because I knew I would need help with my bandages while I was gone and I had to talk to Megan and say, you know, are you okay helping me do this and the everyday things that I need done.

[00:22:24]That's when she had to learn everything that happens in my daily life and then Yeah, she then I had to show Nana and then once I got comfortable with Renita she would come while I'm doing my bandages and stuff and she researched it and everything.

[00:22:53]- I'd never heard of EB.

[00:22:55]Never knew such a thing existed.

[00:22:58]And I was really shocked at the things that she has to deal with in everyday life.

[00:23:04]- [Chris] How much time do you spend in a normal day with your wrapping and bandages and just general wound maintenance?

[00:23:14]Well, twice a week, it is a six hour process to change everything all at once and do bath and re-wrap and everything like preparing the bandages, setting up everything just to get started, probably takes 45 minutes and then the actual process of opening the dressings and putting the ointments and everything on it.

[00:23:45]That whole process takes six hours twice a week, but every day, probably an hour and a half, two hours.

[00:23:57]I try to time it where she's taking a nap and then I do it, but it's definitely, I feel like on the days that I have to do a full bandage change and everything.

[00:24:13]I feel like I'm wasting a whole day with her that we could be making memories and learning together and I also have anxiety and I'm an overthinker.

[00:24:27]I overthink the littlest bitty things.

[00:24:32]When she gets older she's gonna be annoyed and mad at me because those days we're not gonna be able to get out and do anything until I get that done.

[00:24:43]But she is a great little helper.

[00:24:45]She tries to help wrap me and she'll hand me things, but she has that time with her Nana on those days.

[00:24:55]Like I wish I could, when no one's around get, if I could drive and have my own car I wish we could just get in the car just me and her and go do something, go get ice cream, you know?

[00:25:10]She's never gonna... She's never gonna have memories like that of just me and her without someone else there.

[00:25:22]- [Chris] How is your mobility?

[00:25:23]Do you use a wheelchair all the time?

[00:25:24](Everly mumbles) - Yes, I always am in my wheelchair, but I use my legs to scoot myself around.

[00:25:35]But I can stand up and I can walk very, like a few steps okay, but I'm always nervous I could fall.

[00:25:44]So I'm always close to something where I can hold on to it.

[00:25:50]- [Chris] Can you describe why it is hard for you to walk?

[00:25:53]Are there wounds all over your feet and legs?

[00:25:56]- Because one of my feet is fused downward.

[00:26:02]So I walk on my tippy toes on that foot, which makes me kinda not have the best balance when I try to walk. (Everly mumbling) Uh-oh.

[00:26:15]- [Chris] Granny, nice to meet you.

[00:26:16]- Nice to meet you.

[00:26:18]- [Chris] Tell me about your role in Everly's life.

[00:26:23]- Well... - Spoil her rotten like all Grannys do, huh?

[00:26:28](all laughing) - It's hard to explain.

[00:26:32]It's beautiful and lovely.

[00:26:37]- [Chris] What was it like for you when you first met Lindsey and learned about EB?

[00:26:45]I thought, I thought how could that be?

[00:26:56]I thought that God would supply her needs and surely he has.

[00:27:08]- Yes he has.

[00:27:09]- Some mornings I'll get up and go get Everly.

[00:27:13]And I'll go in and say, "Good morning beautiful!"

[00:27:16]And she'll say, "Where's my Nana?"

[00:27:19](Megan laughing) - Yes! (all laughing) - [Chris] What is it like to be Everly's Aunt Alf?

[00:27:32]- It's a blessing.

[00:27:35]I have CP myself, so when I saw Lindsey, I know that I am very blessed because I thought I had problems, excuse me.

[00:27:54]But when I saw Lindsey, I said, "God, I'm blessed."

[00:28:01]And I love Lindsey just like I love my natural family.

[00:28:05]To me, she's part of us.

[00:28:09]- [Chris] Lindsey, what is it like to have this loving family around you?

[00:28:14]- I don't know what other word that can describe it, but I'm blessed.

[00:28:19]We are both blessed.

[00:28:22]And I'm so thankful that God led us to where we are and put us all together.

[00:28:30]That my little girl will always have, be able to grow up knowing she always has somebody.

[00:28:38]Even if mommy can't help her with something, she'll always have someone she can go to.

[00:28:44]- [Chris] What are you most proud of Everly for?

[00:28:48]- Everything.

[00:28:53]I'm proud to be her mama.

[00:28:55]Proud of how strong she is and loving and smart.

[00:29:00]In my mind she's going to be a doctor or a nurse at Cincinnati Children's Hospital where she's going to be an EB nurse.

[00:29:08]So she can go into the room and when there's a patient there with EB and say, "Hello, my name is Everly.

[00:29:17]I want you to know that you can feel completely comfortable with me and I understand it all because my mother has EB too."

[00:29:25]That's just my little fantasy that is going to happen later on.

[00:29:31]- [Chris] What will you do if she wants to be a rock star?

[00:29:33]- That's fine too.

[00:29:36]She can do it.

[00:29:38]She has the world open to her.

[00:29:42]She's going to be great at whatever she wants to be.

[00:29:45]- [Chris] Well, let me ask you while it's on my mind, I know a lot of people in our community have donated to EB research, and you're actually using one of the treatments that was approved because of that research.

[00:29:57]- Yes. - Can you tell me about that and how it's positively impacted you?

[00:30:01]- It is a, it's called VYJUVEK.

[00:30:05]It is a gel that has the gene that we're missing, and you put it on the open wounds, in the same ones until those wounds heal.

[00:30:18]And it has definitely helped me a lot.

[00:30:21]My back of my shoulder and my neck used to be covered with wounds and now, I just have two little ones and they just came up because of the change of weather.

[00:30:35]- [Chris] Just a little sidebar real quick, I want people to know that when they do contribute to EB research it's actually making a difference so thank you for sharing that.

[00:30:43]- Yes, if it wasn't for the donations that people give to that, there's no way that I would ever be able to benefit from the treatment.

[00:30:55]- Thanks for watching "SBSK."

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