SPEAKER_05 0:00

My kids know that I can't necessarily see them, but my kids know they're seen a hundred percent. Yeah, all the time. They know that they are seen, and that's that's our job.

SPEAKER_04 0:17

Hey everyone, I'm Charity.

SPEAKER_01 0:19

And I'm Austin. Welcome to the Central Vision Podcast.

SPEAKER_04 0:27

We're two hosts living with vision loss, sharing honest conversations about life through the lens of blindness and low vision. From relationships and travel to careers and technology, from family and confidence to accessibility and everything in between.

SPEAKER_01 0:41

We'll share our experiences, ask the questions people are already thinking, laugh through the awkward moments, and explore what it really means to live with vision loss.

SPEAKER_04 0:48

So whether you're living with vision loss yourself, love, support, or know someone who is, or you're simply curious, looking for a different perspective, you're in the right place.

SPEAKER_01 1:19

Today we're gonna be talking about something different that we have not touched on yet, and that is parenting with vision loss or blindness. Now, because I don't have kids myself nor have been in that position myself, I'm not gonna be able to take the wheel in this one. So I'm just gonna be here to kind of direct the conversation, ask the questions that some of you might want to ask because you as well might be sitting there wondering what it's like as well. But first, we're gonna start off letting them introduce themselves, explain their situation. So we're gonna start with charity first. Some of you have already heard, you know, her background, but we want to update everyone exactly who they haven't heard a story yet. To let her go ahead and share it, and then we'll get to Stephanie and move through it. So, Charity, go ahead, Eston, give us your background.

SPEAKER_04 1:56

Yeah, okay. I'm gonna just do a real quick overview since a lot of you have heard my story before. So I am 54. I have retinitis pigmentosa. I was diagnosed when I was 23. Um, and it was before my diagnosis came before I ever thought about having children. Um, it was a, I mean, a period of time ago, 31 years ago. And we're gonna get into genetics at some point during the conversation. And my diagnosis came before genetic testing was was around and available. Yeah, but my diagnosis came before I had my children. I currently have about three or four degrees of vision. Um, at the time I was diagnosed, I had approximately 40.

SPEAKER_01 2:44

So what about you, Stephanie?

SPEAKER_05 2:48

Okay. So I have retinized mutosa as well. Um, I have two children. Bailey is 20, Maddie is 14. I was diagnosed when I was 24. I'm 40 now. So Bailey was four years old. So I had already had my first child. However, I was pretty much showing symptoms um in 2001. So it took me a while to get into a doctor to actually get a diagnosis, but I was definitely having some symptoms way before I was diagnosed. Um, I have about one degree of vision left now, but I was at about 20 degrees of vision when I was diagnosed 16 years ago.

SPEAKER_01 3:27

Okay, so where you were you were probably still driving then when you had your first child.

SPEAKER_05 3:32

I was. I stopped, I gave up my license in 2012. So um it was right before I had my second daughter. So I I got to kind of experience it both ways. My my oldest has experienced me driving, not that she remembers a lot of it, and my youngest has never experienced me driving.

SPEAKER_01 3:53

So that's such a weird sensation. That's gotta be insane as a child to to never like have that memory that your mother has never driven you. That'd be a weird thing to explain to your kids or your friends, you know?

SPEAKER_05 4:08

Like it is. It is. I actually my daughter's friends all the time tell her, they're like, Well, can you come over? And she's like, No one can bring me. They're like, What about your mom? She's like, She doesn't drive, and they're like, Why? And she's like, Because she's blind. They're like, I have a grandma that's blind and she drives. And Maggie's like, Good for you. My mom doesn't drive. I'm like, I don't drive for for good reason.

SPEAKER_04 4:31

None of my kids really experienced me driving either. I had to give up my license when my son was um a year and a half. So um, none of my kids grew up with me driving. Oh, yeah, it's hard. It is hard.

SPEAKER_05 4:46

It's a big thing. It's a big deal. It's a very, very big deal. Not driving. It's a big one.

SPEAKER_04 4:52

It's big for the kids and it's big for us as parents. Yes. Yes. I would say it's the number one thing for me in terms of raising my kids and the degree of difficulty that it adds to your situation. Yep.

SPEAKER_01 5:06

That has always been the So with with you, Charity, since was it something that you ever, you know, cause because you did have your diagnosis prior to having children, correct?

SPEAKER_04 5:22

Yes, I did.

SPEAKER_01 5:23

Okay. And you knew it was genetic, yeah.

SPEAKER_04 5:26

I did. Mm-hmm.

SPEAKER_01 5:27

Was it something how did how did you feel about that? And and your partner at the time, um, I don't know, the lineage and everything with your children. But uh, you know, what how would how did that decision go in your mind? Were was it something you guys had to really consider? Is it something you consulted the doctors with, or how did that what did it look like?

SPEAKER_04 5:46

So when I was diagnosed, I was diagnosed back in um, I guess it was oh, I don't, I don't know, 95. Yeah, 95. Um, genetic testing wasn't prevalent. And based on my family history, they gave me some assumptions about how I carried the gene. They assumed that I carried the gene autosomal recessive, and that assumption was correct. Um, I've had genetic testing done just recently, six years ago, and I do carry it autosomal recessive. But I, having a science background, at that time I had completed my degree in chemistry. I've always had a huge interest in genetics. And knowing that I carried it, or the assumption being that I carried it autosomal recessive, I knew what that would mean for my child. And unless the assumption was wrong, I knew that my son would be a carrier. My ex-husband, he was not tested, but there was no reason for us to think that he had it was a carrier or he didn't, he definitely didn't have the conditions. So I will also say that I was diagnosed at 23 and I sat in denial for a long time. So while I made the decision to have kids, knowing genetically my child would not have RP, I also was a little bit in denial. I was able to drive, and that was like the main thing for me. That that was up until I had to take have my license removed. It was like, I have RP, but that doesn't mean anything because it is doesn't impact my life at all. So I did make an informed decision to have my child, knowing that how the genetics would be carried forward. Um, but I knew he would not have the condition itself. He would be just a carrier. Yeah.

SPEAKER_01 7:45

Okay, that makes sense. And I mean, I would imagine too, it's a little bit more difficult at that time when things haven't, you know, because you know, Renox Pigmentosa is progressive, so it's a little bit harder to to have that kind of fear about having a child when you haven't experienced the really the when it gets worse and worse and worse when you're not driving anymore and like the real hardships kick in to where you think like, oh, they could be fine. Like it's not that bad. Like I would assume that that's kind of a thing in the what about you, Stephanie? Did that come into play with you in the thought process of having children or a fear or any kind of a situation like that?

SPEAKER_05 8:23

The only fear that I really had once I got that diagnosis was just the fear of the future for my kids. It was I only had one at the time, and the only thing that I took away from that entire appointment was the word blind. And so I started really panicking. I was like, oh my gosh, like I'm not blind right now. And at that time, I literally thought blind was just you couldn't see. I was very naive. I just I literally thought what everyone else thinks, you either can see or you can't. There really is no in-between. So I felt like, you know, well, I'm not blind now, so it's fine, but I I cried for a long time. I because I was really scared. I didn't know like if I was gonna wake up the next day and I couldn't see my kid anymore. I had no idea anything that was going on in my life, and so I was a little scared for the future. That kind of it kind of tapered off a little bit as I did a lot of research and my second child was neither of them were planned, but the second one wasn't only a planned, but I had already known that it was they weren't gonna be affected. They were gonna be carriers, both of my daughters, because I also have autosomal recessive. And so knowing that they wouldn't struggle with anything, I knew that going into it, but I was still just so hyper focused on the future that that's still like that. When is the lights gonna turn off? I not knowing that has kept me from living in the present a lot. So it's it's still a work in progress. I'm not gonna sit here and say that I still don't I still don't do those things. I'm I am well in my daughter, it was four and she's 20 now, and I still do the milestone thing. I I'm I'm trying to get to Maddie graduating high school because I I would say I want to see it. I really didn't see Bailey cross that stage, but I I knew what was happening, you know. But there are there are things.

SPEAKER_04 10:17

That's the biggest part, I think. Once I had my kids and um so my oldest is my only biological child. I have two other children that are younger and that are adopted. Um, so Cameron's the only one that would be um potentially afflicted by this condition. But um after I had him and my vision started to decrease, and I lost my ability to drive, that's when I lost my ability to drive when he was a year and a half. And that is when I really had this, and I I was going through a divorce at the time. So here I am, a blind parent by myself with a young child. I can't drive. That's when reality started to kick in. And that's when I really had to consider going forward what my life was gonna look like parenting a child being visually impaired. Because that's when the impact really started. Um, and just like you, Stephanie, I started thinking he was a year and a half, and I now can't drive. And am I gonna see him graduate from high school? Am I gonna see him graduate from college? Will I see him get married? Right. And thankfully, I've seen all those things to varying degrees. He just got he just got married last year, and with three degrees, I mean, it's it was hard. I mean, I mean, you know, it's hard to see, but you see it, you see the general stuff.

SPEAKER_05 11:44

It's a just a different way of seeing. We we make it work. We do yeah, exactly.

SPEAKER_04 11:50

Exactly.

SPEAKER_01 11:51

So for for for you guys, and we'll ask you, Stephanie, first, what do you think was your biggest fear? Was it the things that you would miss or the way your children, like how their lifestyle would be different from say a child a child with a parent that does not have vision loss? Like what would be your what do you think was probably your biggest fear with that, or might still be your biggest fear?

SPEAKER_05 12:15

Um I never really thought of myself. I guess because when I was already diagnosed, my identity was already a mom. So when I got the diagnosis, all I thought about was my kid. And then when I had another child, it literally just became these are these are the children that like I'm supposed to protect them. I'm I'm responsible for them. I need to raise them, I need to take care of them. And I was very terrified that there were gonna be things that I wasn't gonna be able to do because you want to do it all. You really do. You even if you have help, you still want to just be that mom that's doing all of the things for your kid. And I was so terrified that something was gonna happen to them. It's a fear that you have that if something happens to them, it's gonna be your fault and you're gonna lose your child because of your you blame yourself. It's just it's yeah, it's an instinct that it's hard to shake it. I'm I am still that way today. My daughter is 14 and she walks to the bus stop alone at 610 in the morning and it's dark outside. And I just have this fear that if something happens to her, I'm not gonna see it happen. I'm not, I'm I'm I'm it's just it's a terrifying thing. It's it's never a fear that goes away. I even at I've accepted a lot of things with my vision, but I have never been able to get over just the fear of something happening to my kids and it being something that's my fault. As they've gotten older, it's gotten a little easier. No one's sticking things in outlets. That makes me feel a little bit better, but it's still just it's still this fear of just I've had it happen a million times. Maddie's sick at school. Okay. I want to get my car, I want to go pick her up. And I can't, and I cry, I beat myself up all the time about the fact that my kid is sick laying down in the nurse's office, and I cannot go get her. I mean, I could take an Uber, but that's probably not my thing around here. I don't really do that. So I just I want to be able to be that mom that can just show up all the time. When I do show up, it's just learning to ask for help all the time.

SPEAKER_01 14:13

Yeah, yeah. So what does that look like for you when you I mean that's a great thing, it'll be with I mean, gosh, all the amount of times I was sick or inevitably ended up in the principal's office for no no blame of my own ever. Of course not. But you know, my mother having to come to school to come get me or getting hurt maybe, you know, in a in a sport during practice or something like that, you know, they always have to drive to come get you and be able to put everything down. So for you, I know we've talked before outside of this that you know, you have you're fortunate to have people around you, friends, family that can help you. Is that what that looks like? So I mean I could imagine how odd that would be is like let me get an Uber to go to school and hey, sir, you gotta wait here because I have my sick kid and then we're coming back here. Like, wait, what?

SPEAKER_05 14:57

Uh nope, yeah. That's that's and that's also a thing, too, is whenever you have a child that's sick, especially during COVID, you feel guilty that you have to ask someone to bring you and be around your sick child. That's like a whole nother thing, right? I feel bad because I'm like, my child is sick. What if they're contagious? A lot of the people that helped me are older, and I just always felt really bad about having to ask for help. It's but it's the only way I was gonna be able to get my kid home. And it's it's uh it's still difficult. It still really is hard.

SPEAKER_01 15:30

And it always will be. Moms will be moms.

SPEAKER_05 15:33

I'm never gonna let that go. I don't care. Like even my college kid, when she's sick, I'm like, I want to drive up and take care of you. And she's like, it's okay, you don't have to, it's fine.

SPEAKER_01 15:42

My mother reminds me of that constantly of I I will always be your mother. I'm sorry, Austin. I'm gonna be your mother. I'm I'm going to always care and worry. Okay.

SPEAKER_05 15:52

It's a real thing, Austin. It's real.

SPEAKER_04 15:55

I guess um, from my perspective, my biggest fear has been similar to Stephanie's, it's been about my kids and being not being able to be, because I I'm a the type of person who wants, like you, Stephanie, to be involved in everything. I want to be the soccer mom. I want to be the room mom. I want to be the mom who says, I'm going on the field trip and I'll pack five kids in the back of my car, but I can't do that. And I I just always worry about the impact of my vision loss on my kids, not so much about myself. Sure, I don't want to miss out on the moments and the milestones and and and all those things, but I worry about like you, the involvement. Like how involved can I be? And I will say, um, after I moved to South Carolina, so when my son was four, I moved to South Carolina and I went through the process of adopting another child. So I was single, and um I actually want to touch on that in a little bit. But uh I met my husband and we we met and married when my son was seven. And we actually set up our life um where I because at some point I had to quit working, and we set up our life where I would be in close proximity to my kids' school, where I could, when they were sick, I could walk to them. For a while, I drove a golf cart. I felt like it was a car, and I would go pick them up in the golf cart. I was so cool. Picking up my kids in the golf cart, but um we we arranged our life where I could be in close proximity to the kids in case something like that happened. So that's how we handled it.

SPEAKER_01 17:47

I like that a lot, and you bring up a good point with I mean, there's a couple things you brought up is one of the things that I would, you know, there is the fear and the the things that come with raising a child, but then there's the the out the the look from the outside of your participation as a parent in your children's lives and how other parents might and times change, right? The way people speak to each other and the things that they're concerned about change drastically as time moves on, but you know, why is your mother never in the PTA? Why is your mother never on the you know field trips, chaperoning and whatnot? They, you know, it's kind of usually it's looked at by society, you're supposed to trade that off. Why is she not the pizza parties or you know, whatever it may be? I I imagine that would be difficult from the outside looking in and not understanding that and it, you know, people jump to the conclusion how easily anymore.

SPEAKER_04 18:36

Yeah. I would always address that by um, because I felt that guilt. Like, I'm not the mom going on, they put out the blast, like we need parents, and I I just never even respond. But then when they when they put out the call for we need notebook paper for the classroom, or we need somebody to provide cookies or juice boxes or you know, crayons. I'm like, yes, all of it. I'll do all of it. Just give me all of it. But I'm not going on the field trip because like I'll be another kid.

SPEAKER_05 19:08

That's what I always thought. I was like, Yeah, we need to chaperone, but who's gonna chaperone me? Exactly. Who's gonna hold my hand?

SPEAKER_01 19:15

I love that. And I mean, it comes right back to the thing that is will always be a revolving notion on our channel with people like us that deal with these things is communication, communication, communication. Tell people what's going on, explain it to them, and do what you can do. You know, you have to understand your life is going to be different, the way you approach things is going to be different. So do what you can do, be a part of what you can be a part of, but don't, you know, don't recluse yourself, don't not be a part of anything because you think you can't do anything. Because I promise everyone else will believe that then. That you're just someone who doesn't show up for your kid or whatever. You know, just make it clear. Like, listen, I got this going on. And I, you know.

SPEAKER_05 19:58

Yeah, and if you're a part a person listening right now and you have amazing vision, whenever it comes to dealing with anyone that's visually impaired, if you have a parent in a classroom, don't tell them what they can't do. Ask them what you can do to help. Like, what like just it's such an easier thing than it's like, here's all the things that we know you can't do. So we're not gonna ask you to do those. Don't don't remind me. Just give me a list of things that maybe like I could do, or ask me, like, what do you feel comfortable doing? Because you do tend to get singled out. You eventually do lose your voice in the classroom. You do certain things, and it's and it's tough to get it back because it it's really easy to get lost. Like I just sit there and quiet, I'm quiet because I'm like, it's fine, whatever. So you have to come back from that. And a lot of people don't really know how to talk to us. They just don't talk at all. So it's kind of like it's just something else that you just have to learn. The communication thing, it works in so many different ways. It's yeah.

SPEAKER_01 20:54

Absolutely. And Sheridan, you mentioned something else, you know, the golf cart, and then kind of moving. I mean, maybe not the golf cart specifically. And for any of those listening who have vision loss, we are not suggesting that you should go and get a golf cart. This does not replace the fact that you cannot see.

SPEAKER_04 21:07

This is fun, though. I'm down. No, and I only drove it, it was it so I could walk there and I only drove, I only um maneuvered the golf card. Let's put it that way. I only move maneuvered the golf card. I wasn't on main roads or anything. You could go through our neighborhood to get to the school. So I I never put my I never put my children in harm's way.

SPEAKER_01 21:30

Okay. So I'm I'm picturing a Flintstone vehicle now. We just cut out the floorboards, let you just let you use your feed, and that's gonna be a good thing.

SPEAKER_04 21:38

Oh yeah. Yep, that was me.

SPEAKER_01 21:40

But but so preparation of life, moving yourself closer so you have an easier time of dealing with things like that. Stephanie, did you can you relate in any way to that? To where I mean, I'm sure there's so much preparation that comes with every facet and every age in the era of having a child. Like, what what did that look like?

SPEAKER_05 22:00

I the house that I'm currently in now, I chose because it's it at the time was close to my mom and stepdad. It's only a street over. And my brother lives behind me. And it was just nice to know the comfort of family is close. And there are two important schools that are close, also. There's the middle school and then junior high. Uh, I can't remember at the time. I think my oldest was in going into middle school at some point. So it's walking distance. Um, I've done plenty of times I've walked to go have lunch with my daughter, or at least my oldest daughter. And she like spilt some chocolate milk once on her pants and was like, I need you to bring me some pants. And I'm like, well, sure now, I'll walk in the 20 degrees. It was like the only time it's been cold. And here I am hiking to the school with some pants. And so, you know, those are things that I did for her. Uh, there's no way. I being close to the schools now don't really do anything for me. I could probably do it with the right cane training. But yeah, no, I don't I don't do the do the streets anymore. I wandered off into a ditch one too many times.

SPEAKER_03 23:02

So I love that.

SPEAKER_01 23:08

Um so wait now that you are now that you both have children that are, you know, they're older now, right?

SPEAKER_03 23:17

Yeah, they are.

SPEAKER_01 23:32

I mean, and everyone's experience is different, right? Their vision can move quicker, but maybe you were overconcerned and it didn't need that much fear and you know, that kind of idea.

SPEAKER_04 23:44

I would say a hundred percent that I worried too much about stuff that never came to fruition. Like I I put too much time and energy into worrying about what other people would think of me raising my kids. And I have th I have amazing kids. I have, I feel like I did a good job, and it has nothing to do with my vision loss or my lack of vision. They I raise good kids, and I would have raised them the same way, whether I was visually impaired or not. I look at some sided people and I'm like, your kids are terrible. So I mean, it's not, it's not about your vision, it's about how you parent and raise your kids. And I I think that is significant, but I feared a lot that I should not have at all.

SPEAKER_01 24:41

Yeah, absolutely. What about you, Stephanie?

SPEAKER_05 24:43

I feel the same way. I still do I still do it though. Like I said, I I still panic and I still have all this fear, and it's just always gonna be there. But in every situation, I've just kind of found a way. I've either found a way or my kids have found a way. So it's just one of those things where there's a lot of times that I have over I'm still I'm just such an overthinker. And my kids have always been my calm. So it's good that both of them are very good at reminding me that it's you've done this a million times, mom, and you're gonna keep doing it and you're gonna do it great. And my kids are amazing too. So I have to keep in mind that I've done something right.

SPEAKER_04 25:23

So you've done that right.

SPEAKER_05 25:25

Yeah, it's they're a really good reminder, like literally every day, that blind, I'm a blind mom, but motherhood is not defined by blindness. So I love that at all. Literally, yeah. It's like it's they're remind they remind me all the time, so it's really cool.

SPEAKER_01 25:42

So when, Stephanie, when did you or and how did you approach it? You know, once they were old enough, and I don't know what age that looks like because I feel like kids are getting more and more intelligent, which seems backwards too. That I I don't know. You know, some kids are very receptive when they're much, much younger than others. When when was it that you actually had to explain it? Maybe they saw something, maybe they're confused why their mom was different from their friend's mom. When was that? And how what did that look like? What kind of conversation? And in mine, it takes several conversations, I imagine, but how'd that go?

SPEAKER_05 26:16

Uh so it's so different with both of my kids. So Bailey, my oldest, she was four when I was diagnosed, and it was only a couple years later that I had to stop driving. Um, so there was a time very early on, right after my diagnosis, that I started to kind of explain to her that things with my vision were a little different. And at that time, I didn't really know how to explain it. So it was more of just she instantly, and she's very, she's a huge heart. So she wants to just cling to me. So she instantly grabbed my hand, and to this day, she hasn't really let go. So she's just been there by my side on this vision loss journey. I've never really had to have a conversation with her where I've had to remind her ever, or I've had to explain that my vision's gotten worse. She's always been able to tell because we kind of grew up together with it. I mean, I was 24, but I my life kind of started all back over again because I had to work a lot of things. So we just kind of did it together. My youngest, she's my well, just try really hard. So she's that kid. She still is to this day that kid. When she's like, Look, mommy, and I'm like, Oh, I can't see that. She's like, I'll just try really hard. And I'm like, Well, I didn't think of that. I'm like, well, sure, I'll try really hard things, you know, or she's like, Can you bring me to school today? And I'm like, What? And she's like, Well, well, why can't you? And I'm like, because I can't see. And she's like, What if I help you? Like, what can't you see? I'm like, anything. I can't see anything. And she's like, Well, what if, but I'll help you? And I'm like, that's great. Who's helping me home? Princess in the parking lot for eight hours? And she's still like that to this day. She is still very I think she's slowly starting to understand that it's try trying really hard. It's very, very supportive. I appreciate it. It however doesn't work. So she doesn't really do that as as often anymore. But she uh I don't really know. When I asked her yesterday, I actually asked her a ton of questions after reading through a lot of things. Um because I was kind of wanting to pick her brain, she's not wanting to talk about anything, like feelings. So I was like, so I'm like, how is it being you know, having a visually impaired mom? And she's like, it is so cool. And I'm like, it is? And she's like, yeah, we have to skip all the lines at universal.

SPEAKER_01 28:42

I'm like, oh she's right.

SPEAKER_05 28:44

I'm like, okay. Here goes there goes my warm heart all fuzzy. I'm like, yeah. She's like, yeah. I was like, anything else does she want to add to that, or is that it? She's like, well, one day you're gonna have a guide dog, and that is so cool. And I'm like, so about all that spaghetti that I've cooked for you for the last 14 years. What about that? Me feeding you, dressing you, taking care of you. But yeah, it's it is, it's it's it was completely different with both my kids. It still is very different. You know, Bailey's 20, she drives us now. Maddie, I hope never drives because so my goodness. She she's just she doesn't she doesn't like to she told me yesterday she does not like to hold my hand because the ring that I wear, uh, it is uncomfortable for her. I'm like, my bad. I'm so sorry I wasn't thinking of you. So she likes to lock arms or grab me by the wrist, which is interesting.

SPEAKER_01 29:37

Makes sense. Okay.

SPEAKER_05 29:39

I yeah, I look like a prisoner, like I'm going to jail.

SPEAKER_01 29:41

But um maybe if you just try really hard.

SPEAKER_05 29:44

I try really hard. I tell it all the time, Maddie, I've tried so hard. But she wrote to me all the time. Both of my kids do, and it's it's good for us. We we have yeah.

SPEAKER_01 29:54

I love I love that.

SPEAKER_05 29:56

Yeah.

SPEAKER_01 29:56

What uh what about you, Charity? What when that situation came along for you, how did that look for in your life?

SPEAKER_04 30:03

I addressed it with my I was a single parent and my son was young. I addressed it with him right away from the time he was very small because um I I wasn't able to drive. And when we went to go places when he was young, like at the fair or whatever. I needed help and we walked a lot of places. And I I distinctly remember the point where I would tell him versus he knew, and that was when he was three and a half. We had moved to South Carolina, and I was at a friend's house, and they uh we were going to leave, and my son ran ahead of me and into the yard, and it was dark out, and he just turned around and came right back and he said, I need to help you. You can't see well. I need to help you. And I realized at that point in time that it had solidified in him that I was different, that I did need assistance, and um, he was all about providing it. I did worry for a period of time that he was too adult. I mean, he was four and he was helping me, and I wanted to be the one helping him. But I mean, I I did all the parenting things, obviously. I just needed help in that one area, and he was so he was so good about it. Um, and with my the after my children after that, it it was just always a topic of conversation in our house. It was never something that was hidden, it was just normal. And there's a 10-year age gap between my oldest and my youngest. And so the whole thing was just normalized. My oldest would tell my younger ones that, oh, you need to help mom do this, or you need to help her find that. And they got really good about if I dropped something, it was almost a race to see who could come find it for me first, or you know, they'd volunteer to get it. And it it was just something that they've always been raised with and has always been familiar to them.

SPEAKER_01 32:08

It wasn't awesome. That's I I okay. I don't have any kids, but I would I'll I'll babysit some kids for that. I'll just lose something, like, all right, guys, go. That's tons of fun.

SPEAKER_04 32:24

I feel like um, I know that Stephanie and I had talked about this actually the other day, and I feel like my vision loss has actually benefited my children. I was raised with a before I even knew I had any type of disability, as I was growing up, I was raised with a sister who has has a disability. She has cerebral palsy. And I feel like, and my mom will tell you, I feel like it made me a more compassionate person to the outside world. Um, I was always the one who was sticking up for her and um maybe not jumping to conclusions about when something wasn't right about a person, our our our disabilities are hidden. Um and my children, I feel like are very compassionate, very sensitive, very understanding people. And may they be that way anyway, maybe, but I do think that my the way they were raised to assist people, to help me, to not make it a big deal when someone can't do something, just find a way to help them out has made them more compassionate. My youngest is almost an adult, so make that they it has made them more compassionate adults, I believe.

SPEAKER_01 33:47

Yeah, patient, I would assume too.

SPEAKER_04 33:49

Very, very patient. Yeah.

SPEAKER_01 33:52

I mean, the same thing that's happened to us, I would have to imagine, because you know, just like we've talked about before, is they they're there with us, experiencing it with us to where the same things that we are learning, I would imagine the kids are learning in their own way.

SPEAKER_04 34:05

They are they're waiting with us for the ride to pick them up, um the events or whatever, or they see what work goes into me providing for them. I don't just get to grab my keys and get in the car. I have to make arrangements with somebody, be on time, be ready early, get them there, make the arrangements for us to get home. It's a lot of work. It is. And I think that our kids see that and they appreciate what we've done for them, even though it looks a little bit different than the way their friends' parents do everything.

SPEAKER_01 34:38

Did you ever think with something like that happening, you know, with with that kind of rubbing off on the kids, to where maybe there's those times where you think they're growing up too quickly because they're paying attention to these things within you that is not normal for a kid to be constantly worrying about, to constantly be helping you or trying to take care of you or anything like that. Did you ever see something like that?

SPEAKER_04 35:00

Yeah, but I don't think I I don't think they worried about it. I think it was I I don't think they worried. My kids, I've talked to my kids about it too. This is just like me being raised with my sister who had cerebral palsy, that was my normal life. That's that was what existed in my world. And that's what exists for my kids. And I worried about their feelings more than they were worried for themselves. They did not worry about it. Yeah. What about you, Stephanie? Do you is it different for you?

SPEAKER_05 35:31

No, it's basically the same. Like that is that is pretty much exactly how it is because I I have asked them before. I you know, I've told them my concerns, I've told them things I've worried about, and they're like, we don't worry about that at all. Like that's it's not, and it's so it's like so important to hear those things because we have the mom guilt all the time, 24-7 mom guilt. And to be able to hear, you know, that your child doesn't carry any guilt for you or doesn't have any resentment that they're that they're actually just okay. Like they are, they're okay, they're okay with whatever you're going through, they're gonna be there. They've both made it very clear that their life hasn't been altered in any negative way. And like hearing those things, like that is it's so important. It's so important because I just that's all I've ever wanted was to make sure that my disability didn't hinder anything that they were wanting to do. I always made it work somehow or another. I made it happen. It it looked different. Everything about our lives since I've been diagnosed has looked different, but it didn't, it wasn't impossible, it wasn't incapable, it didn't lessen my my role as a mom by any means. But they have definitely been the the reason that I have literally been able to get through everything that I've done, it's because I'm a mom. Like that's my identity. I didn't have anything stripped for me. I wasn't, I didn't have a job, like I wasn't, I didn't go to like college, I didn't have like the career thing, and I got pregnant at 19. So my identity is motherhood. Like that is it. Like that is my that's my job. That's my one role. If I fail at that, I fail at everything. That's how I feel about it. And my kids have always made it very clear to me that I am, I am literally doing the best I can and that they're okay.

SPEAKER_04 37:20

And so it's even so for me, the one of the biggest fears for my raising my kids is um has always been like the middle school years where they're like so and middle school kids are just evil. They're they're horrible, they're me. Oh god, and the girls, oh, way worse than the boys, but it middle school girls are just terrible. And those years I worried about, and I I have a I've talked to my kids about it. I've said I've worried about whether or not they were embarrassed by the fact that I'm different. And they're like, no, uh, it's it's just what it is. And like I have a dog, so they think it's cool. But um I mean, did you did you worry about your kids being embarrassed by there were stories, you know.

SPEAKER_05 38:14

Um, there was uh a young boy that lives on our street that would get off the bus with my with my oldest daughter, and he would kind of poke fun every now and then. Um, because it's been many years, and I definitely don't hang on to negative stuff for very long. I can't remember exactly the things that he would say, but it would mostly just be geared towards, you know, like, oh, your mom is blind, you know, so you should be able to do this and this and this. Or I was cutting grass back then. And so he was like, I thought your mom was blind. How is she cutting the grass? Like, is that even safe? What is she stupid? You know, like saying stupid, stupid, ignorant things that kids say. I can't get mad at them when he's only the kid, right? But it's things like that. That my kid being the age she was then, she advocated for me without ever me ever asking her to. It was instant. It was just like, yeah, she's she has vision issues, but she's still capable of doing things. She's she's she's good. She she she knows her limits, and I don't cut the grass anymore. So I knew back then I the boy was right. I shouldn't have been cutting the grass. So I you know what, if you're listening, son, I'm sorry. But yeah, it was right. I shouldn't have been cutting the grass, but I'm stubborn, so I was like, I don't want to pay someone to cut my grass. Um, so yeah, there's there was times then I mean it took me a second to start using my cane at my kids' events. Yeah. Uh uh because I knew that I knew that parents knew, but there's just something about the cane for me that was always like it made me feel like I was way more vulnerable and helpless almost, which was crazy. I don't feel that way anymore. But back then I did. And I was like, everyone's looking at me, and I still have enough vision to know that people are looking. I can see their scares. I don't like it, it's uncomfortable. Now it's completely different. I'm like Maddie being in high school, I will absolutely walk into a room with my cane. And mostly because I think I've been advocating for myself more on Facebook, so a lot of the parts, they see it now. They realize that I'm not less than. She's not, you know, she's not being stuck at home because of me. I'm I'm making sure she has a life and she's good. So the embarrassment looks wrong away.

SPEAKER_04 40:29

It makes us stronger when when we show that we are going to continue to do things, even though we have to. I have to use the cane or I have to use the dog. There's no way around it. There's and it it makes us for it's it's again more about us than it is about other people. It is it makes us stronger people by showing that this may be an issue for me, but I have a way to get around it. It may not be the most who wants to use a cane? Nobody. No, but I can and I do, and it puts me back into the into life, and that's where I want to be. Exactly. Yeah, 100%.

SPEAKER_01 41:09

Did you ever think that your kids were I mean, missing out because maybe they're worried about you, or really what I think is because kids can be the worst, you know, they really can, and especially at that age, but to not be included in the things, because we all know what that feels like to not be included anymore. You know, some people just assume you can't do something or you're not cool. I mean, force I I hope it's not. I feel like I'm popular enough to do anything. Okay, but but I mean, is there like you know, a time where you thought maybe kids were just mean and no, don't invite that weird kid. The kid's not weird, it's it's your your mom who is different and whatnot, right? I have you ever I've never felt that. No, what about you, Stephanie?

SPEAKER_05 41:54

No, no, no, I guess I'm cool. Guess I'm cool like you. Yeah.

SPEAKER_01 42:00

We are clearly sitting in the back of the where we're the cool kids table in the lunchroom. That's us right here. Premeditated, we got going on right here.

SPEAKER_04 42:09

Cane and all.

SPEAKER_01 42:10

Cane and all. Because yes, we cane.

SPEAKER_04 42:13

Yay, yes, we cane.

SPEAKER_01 42:15

Um, what about the so what do you think is was for each of you the hardest thing that you have not been able to see or are in fear of not being able to see? Because I have to think that every single potential parent or current parent right now is worried about that. Am I going to see my child do this or this milestone in their life? Or, and it could be anything. I assume that you both have many of them, but what would you say that, you know, one of your top ones is? Start with you, Stephanie.

SPEAKER_05 42:44

It's different phases for me. So, because right now I'm like, I feel like I'm at the like the last leg of this race. So my daughter's engaged. So I wholeheartedly want to make it to where I can I have some sort of vision left for her wedding. That's just, I have this vision. I just I want to see her in her dress, or I want to look through my phone camera to see her in her dress. I I want to be a part of that. And, you know, then you think of grandkids, you know, like I don't have any visual memory of grandkids. So I want to be able to have that visual memory because for me, I don't really see faces that well anymore. But if I've seen your face before, at least once, at least in good light, it's kind of there. So, like my daughters, when I'm looking at them, it's I'm still picturing what they look like. But new things like grandkids years down the road, hope many, many years down the road. Bailey Taylor, if you're listening. Um, I just like I don't, I won't be able to, I won't have any visual memory of them. So I want to have some sort of sight left. And the same thing goes for Maddie. Like, she's a freshman, so I really want to see her graduate. But it's even smaller than that. I mean, every little milestone. Like, I want to s I can't really see her course concerts. I never could see Bailey and her band concerts, but you can hear. Here and it's I'm grateful for that part of it. I I um it's okay with me that those things are things that I couldn't see. I kind of made peace with it, but the things in the future that I really want to see, I'm really hopeful and I'm almost scared. Almost scared.

SPEAKER_01 44:14

Yeah. And I think too, when when you're losing vision, I mean, yeah, you're losing vision, but even if you have a minuscule amount left, those moments become so much more powerful and important to you. You know, you I think you probably naturally pay much more attention. And you know, it drives me crazy when I go to a concert now. And I used to be one of them holding up my phone for you. I didn't send it to anyone. I'd never went back and looked at it. And I realized I was observing life through a screen. And now that I put that away, and you know, with my vision declining, it has become so much more important to me to be in the moment and every every environment that I'm in to just look around while you can and enjoy every bit of it. Yeah. What about what about you, Charity?

SPEAKER_04 44:58

Mine is very similar. Um, I have milestones for each of my kids. Um, for my oldest, I would, I want to see my grandkids. They are in the, they're hoping to have a child sometime soon. And not only do I want to see them, I want to be able to watch them grow. I want to not just see them as a baby, but when they're four and when they're, you know, all those, all the stages. But for my youngest, she graduates this year, and I want to see her graduate high school. I want to see her graduate from college. And Stephanie, it's kind of funny when you were talking about um the sports and stuff or the her concerts and stuff that you can't see. I go, my daughter plays basketball and it's a fast-paced sport. And I've I always tell her, she's like, Did you see when I did that? I'm like, listen, I can either look at the goal or I can look at the people on the court. I can't get both. I can't follow the ball. But so I usually choose the goal because then I know when to cheer. Like I know when to cheer for our team. And then when I hear the people moving to the other side of the court, then I watch our players on um defense. So I kind of go back and forth. But in the meantime, my husband is really good about capturing everything on film for me. So while I can't see it in person anymore, he will a lot of times follow my daughter with the camera and I can watch it later. And or like if there's a lull in the in the play, he'll be like, Oh, look at you can see what Sarah just did, or I'm like, it's so good. It's so good to see. Yeah.

SPEAKER_01 46:42

Okay. So we are getting more towards the end here, and I'd like to really turn our attention towards the people that are watching more so. So I each of you have very different stories, very different experiences. And what I would really like to come from this person will stop being so afraid or at least at least help out a little bit here, and to not think they're not allowed to have kids or something like that, or it I mean, it's gonna be tough, it's gonna be different, but it's I mean, I don't think either of you regret it at all, from what I understand.

SPEAKER_04 47:15

That's no, but and before we close, there is one thing that it was very important for me to address. There is a myth out there somewhere that if you are visually impaired, not only should you not have kids, but your kid is going to be taken away from you. And I just need, based on my own personal experience, I had a kid when I had a child when I was visually impaired. Nobody at the hospital even thought about taking my child from me. But also, um, and I think this is really important. Um, when I moved to South Carolina, I was a single parent. I was not driving, my vision was severely impaired. And I went through the process of adopting a child by myself. And in order to do that, I had to get approval by um basically, I don't know what they call it in each state, CPS or social services or DSS or DFACS, whatever it is in every state. But I had to have a social worker come to my house and see me, see my son, see my environment. I had to give medical everything in order to go through that process. And there was never one step along the way that anybody said, you cannot do this because you are visually impaired. Your child is not safe because you are visually impaired. They did ask me, how are you going to handle these type of things? And I was able to address them in a manner that was acceptable. And it was never me, I'm gonna do it myself. It was, I have a support system. This is how I'm gonna get my kids to school, this is how I'm gonna get them to the doctor, this is how I'm gonna handle safety for them. But it is, if anyone thinks that you're you can't have children because they won't somebody will try to take your kids, it's absolutely nonsense. If you don't, it's not about whether or not you're visually impaired, it's whether or not you can't you can provide for your kids in a safe manner. And that's all that matters. And I think if you're going into having kids, that you know you can provide for your kids in a safe manner.

SPEAKER_01 49:24

Yeah, absolutely. So with you, Stephanie, what I mean, imagine someone was listening to this that is either considering or has kids currently. I'm sure that they can kind of overlap a little bit. What would you, what would you, if you were sitting down next to them, what would you tell them? I mean, based on the experiences that you've gone through.

SPEAKER_05 49:42

You can't do it alone. You you gotta, you gotta be able to ask for help. And sometimes that means asking your child, which is it's a hard barrier to understand that when you're a mom, you know, like you're the caregiver. But asking your kids, you know, to help you in certain situations, it's not wrong. It doesn't make you less of a mom. You have to learn to advocate for yourself. You have to learn to ask for help. You you do it. You do it tired, you do it exhausted, you, you know, you just show up. You show up for your kids, they'll know you're showing up for them. Like my kids know that I can't necessarily see them, but my kids know they're seen a hundred percent. Yeah, all the time. They know that they are seen, and that's that's our job. Our job as moms and parents and caregivers is to take care of our kids. And you do not have to do that with vision. You don't have to have vision to take care of someone, to love someone. You know, it's not something that you see, it's a feeling. So do it, just do it and do it the way that you want to do it. Do not do it the way society tells you. Don't listen to other people's negative remarks. If you do, let it make you a better mom because you can do it. I 100% agree. Mom.

SPEAKER_01 50:54

Well, well said. And I know charity, you had just said everything you had just said, but what about yourself? If from your experiences, if you were talking to someone, did you have anything to add to that?

SPEAKER_04 51:07

I would agree 100% with Stephanie. And I would just say, yeah, I would think about it. I would obviously put a lot of thought into it. And I will say, if my genetics were different, I I don't judge anybody if they say I would not have kids because genetically I don't want to pass this on, or maybe they're autosomal dominant and their kids would definitely have the condition, or if like a chance to have the condition. Um, I wouldn't pass judgment, but I would just say think things through and you can do it no matter what. Just make a plan and be prepared. And yeah, like Stephanie said, the biggest thing is putting your pride aside and reaching out for help. And I've I've never run into people who uh say no, like I'm not helping you. It's just it's a it's something that we do together as a community, and yeah, it can be done. I would not hesitate to have a child. I would, I would definitely encourage it.

SPEAKER_01 52:14

I love that.

SPEAKER_04 52:15

Just planning.

SPEAKER_01 52:16

I definitely think yeah, it's just it's it's planning, being aware of all the facts that you need to know. Yes. I mean, that's uh it it's I think the most important thing to take away from this is there are the differences, the hardships, the things that come with it. But everything that's been said today, it's to encourage everyone to know that you can be not just a parent, but a great parent. Both of these women here sitting with me, guys, are fantastic parents. They haven't parented me, so they don't know what a what a really rough ride is as a child to having a child like me. My parents understand. But you can have kids. It's not that you can't. You just need to make sure that you go into the situation with understanding what's coming and what you know what things can be or can't be and in things like that. But no one in this world can stop you from being an amazing parent, an amazing mother, a loving mother, and give your children everything they need.

SPEAKER_04 53:12

Eyes wide open. Yeah, just hit it, eyes wide open. Yeah.

SPEAKER_01 53:16

Which I know is very contradicting to the people who are excited. Like, what the what are these guys talking about? Eyes wide open, yeah. We know, we get it, guys. We are just try really hard. Just try really hard.

SPEAKER_04 53:29

Just try hard.

SPEAKER_02 53:30

Try.

SPEAKER_01 53:31

Yeah, just try it. But that is about our time today, guys. I am so thankful to have you on here, Stephanie. It was really great to listen to both of you talk about a conversation that I have never been able to have with anyone, really. And it's awesome to hear your points of view. And I'm sure all of you out there have your own points of view, and we would love to hear them. Both of these women are active on social media, so if you drop the comments and ask certain questions or share your experiences, we'd love to hear them. I'm sure they would love to hear about them too and share their own tips, tricks, anything like that. And then also for the men out there, the fathers, we will probably end up doing an episode with fathers because obviously that role is very different. The mother versus the father is it. I I I know things are a little bit different in each gen, but it can be very different. So I would love if there's any fathers out there that are listening that are visually disabled or have blindness. I want to hear from you. Send us a message, comment on this, tell us that you'd be interested in being on here. Maybe we can talk to you about maybe being on one of our episodes and be our next guest.

SPEAKER_04 54:36

And same with same with sighted sighted parents parenting children with vision loss. That's a topic that we need to hit on too. So if you're a parent that is raising some a child with vision loss and you are sighted, comment here as well because we'd love to talk with that as well.

SPEAKER_01 54:55

We absolutely want that perspective. That would be an incredible thing to hear about. I will be bringing my own mother on here to hear about how that change was for her. So please comment, like, subscribe, all the fun things. You can catch us on centralvision podcast.com. Our TikTok, Instagram, and Facebook are all at Central Vision Podcast as well as on YouTube. Thank you so much for coming out, guys, and having some fun with us. See you next Tuesday.