Parents' Perspective: Shelby's Family | Episode #11
Episode 11
Parents' Perspective: Shelby's Family
We introduced Shelby in episode 3, and here in episode 11, we get to hear all the awesome details of what Shelby has accomplished from her parents. Shelby is quite humble, and her parents Bill & Debbie, have A LOT to share regarding the many adventures and exploits of their brave and ambitious daughter.
Bill & Debbie Craig also share their story of the events leading up to receiving the news of Shelby's blindness and their approach to parenting.
"It was a very steep and quick learning curve for us. We had to struggle with having two kids. One of them with a severe disability and trying to navigate through a school system that was not very supportive.
Fighting school districts and fighting insurance companies. It was a very intensive time for us. We'd been married five years before we decided to have kids, this was definitely a shock. We had to learn as we went. Both Shelby and her twin had epilepsy, so we were not only battling that, we were both full-time and, you know, fully employed and trying to juggle two babies back and forth to Michigan's surgeries, unsure of what the future holds." - Bill Craig
Show Notes
This is the link to the video of Shelby singing the National Anthem at a Detroit Tigers game. Before the goes on, she sings a private duet with Tigers manager Jim Leyland.
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0:00:07.7 Dr. Patrick Droste: We would like to welcome the world to our Through Our Eyes Podcast. Brought to you by the Pediatric Retinal Research Foundation. We're a community of visually impaired young adults talking about what it's like to navigate through high school, through college, through career development, and beyond.
0:00:31.1 Debbie Craig: All right. This is Debbie Craig.
0:00:31.9 Bill Craig: And I'm Bill Craig. And we're Shelby Craig's parents.
0:00:36.2 Nicole Gudicci: Very nice to meet you guys. Thank you.
0:00:37.8 BC: Nice to meet you too.
0:00:38.8 NG: And thank you for giving us your time.
0:00:39.8 BC: Absolutely.
0:00:40.5 NG: So we're interested in everyone's story because everyone's story is very different. So can you give us a little background, starting with when you found out that Shelby had some visual problems that kind of kicked everything off for you guys?
0:00:56.1 BC: So I don't know how much Shelby has told you, but she was 10 weeks premature with her twin brother. And about the third week out after they were born, we found out that Shelby had some issues. We had gone to the Storm Eye Institute at MUSC in Charleston, South Carolina. And the discussion was Shelby was having some problems with her retinas. Both Shelby and her twin brother had the same problem, but Shelby's progressed much more extensively. We had a lot of discussions with the doctors at MUSC. They did basically the extent of their knowledge to alleviate the problem. They found out that there was not a viable way to stop the progression of her blindness. So we were sent to Detroit, Michigan, and at six weeks, Shelby spent her first Christmas in Detroit, Michigan. So that's kind of how we found out. The nurses and the doctors in at the, her initial hospital were kind of surprised because they did not expect her vision problems to be what they were. And they knew something severe was going on.
0:02:00.4 DC: They did [0:02:02.4] ____.
0:02:02.5 NG: So, Shelby's twin brother’s vision is better than Shelby's, Correct?
0:02:06.7 BC: Yes. It alleviated itself as they expected Shelby's to do.
0:02:10.5 DC: But I think the doctor here in Charleston realized that she was... Even at 10 weeks early, she was too old and too big, even at two pounds and 12 ounces or what it was, whatever it was.
0:02:23.9 BC: 214.
0:02:24.0 DC: Two pounds, 14, that she should not have a fully detached retina at that point. So he made some calls and said that we should see Mike Tracy in Michigan. So they did a few surgeries on her eyes were not responding, and the doctor came back and said, I do believe this is a genetic issue. So we were all tested. She had some type of mutation on one of her X-chromosomes. Her brother did not have that. None of us have the mutation and it was not as simple as ROP, which is initially what they thought was going on, but that did not prove to be correct. So we have been to Michigan over a 100 times and sadly, unfortunately not seeing Dr. Tracy anymore. Now seeing Dr. Capone.
0:03:12.1 BC: She initially was diagnosed with ROP, it was later determined by Dr. Tracy. She actually suffered from fever, which is familial exudative vitro retinopathy.
0:03:21.6 NG: So I imagine this really threw you guys for a loop with an infant that young. How did things unfold then as she got older?
0:03:31.3 BC: Well, being our first children, it was definitely a very steep and quick learning curve for us. We had to struggle with having two kids, one of 'em with a severe disability, trying to navigate through a school system that was not very supportive. Fighting school districts and fighting insurance companies. And it was a very intensive time for us. We'd been married five years before we decided to have kids this was a shock. We had to learn as we went.
0:04:04.2 DC: They also... Both Shelby and her twin had epilepsy. So we were not only battling that, we were both full-time and fully employed and trying to juggle two babies back and forth to Michigan's surgeries, unsure of what the future holds, work full-time. It was a lot. It was a whole lot.
0:04:26.4 NG: What would you say was the biggest challenge you guys faced before she went to school?
0:04:32.1 DC: Just trying to understand. I mean, I had interacted with a few blind adults in my life, but never a blind child. So you're looking in... You have two equally matched children here, so to speak. And one is starting to meet milestones and the other does not. And so trying to... First of all, we live in South Carolina, a backwards state, and I'm sorry to say that's my home state, but there just were not a lot of services available, not a lot of resources to turn to. And it's not like there was anyone at your door saying, here, here's the guidebook. Follow these steps. I mean, you basically had to find out that information on your own through digging and making phone calls and asking questions. There were a few people along the way that offered some guidance, but I will tell you, those were very fast years.
0:05:25.2 DC: We knew she was eligible to start school at age three. And our local commission for the blind went with us. If you can say that to our initial meeting with the school district. The school district did not have a self-contained classroom. They had no braille books. They had no braille writers. They'd have to check the budget to see if they can get those items. I mean, just as new parents, first of all, and parents trying to navigate this world of blindness and what does that mean and what is the best thing to provide for your child? I can honestly say that Bill and I had our day of shedding our tears and what in the world we're gonna do. And then we snapped out of that and said, she did not ask to come in this world and we need to provide the very best services and resources for her as possible.
0:06:13.6 BC: I mean, to give you an idea of what we were dealing with as far as the state goes, I had to learn how to repair a Perkins brailler in order to ensure that she had a serviceable brailler when she was in school. They did not understand how to deal with the child with the visual impairment. We actually had to go out of our home district in order to get her the services she needed. It was a very telling experience for us to understand that if a child fits within the confines of a normal kid in South Carolina, South Carolina's pretty decent at educating a child who falls within a specific parameter. But once you start stepping outside of that, the state's totally inadequate as far as what needs to be done for that child. And we got that kind of thrown in our face at a very early start.
0:07:06.5 S4: Was there ever a time or a pivotal moment while she was in school where things really turned around?
0:07:12.1 DC: Well, yes, I can answer that. It didn't turn around favorably. It did in the end, but she was bused to our neighboring county because our home county did not, could not, and would not provide services for her. So we opted to go to the next county. She went there from age three until sixth grade. In sixth grade they asked her to come back to our home county, which she did, and promptly gave her a braille teacher that did not read braille. She was the only blind child in the county. So we struggled with that for a few years and then decided it would be best to move to a county that could offer her an itinerant teacher that was certified and qualified to teach braille. So that was sort of the pivotal moment. I guess the first one would've been when we asked to go to the neighboring county, we found a wonderful teacher who was in charge of this self-contained classroom and was extremely proficient in braille and a dedicated teacher. So without those early years, would've been lost, honestly. And I guess that's one thing that we have learned as parents, you have to keep moving forward. And if you don't get the answer you need, go somewhere else. Ask questions, knock on doors, make phone calls, whatever it is that you have to do to get those services.
0:08:40.4 BC: One of the things we did learn as parents for a child with a disability is we had to become her advocate. She was not able to present her own voice. She didn't know what she needed. So we had to be the screaming and yelling involved. We had to be the Karens, if you will, to get the services that she needed.
0:09:00.6 NG: How did things go towards the end of high school and that transition from high school, either to college or just kind of the real world?
0:09:09.7 BC: We knew when Shelby left high school that she needed to have some independent skills where she could live on her own. So four days after she graduated from high school, she wound up going to the Colorado School for the blind to learn independent living skills. And she spent a year there at that point when she obtained those skills and she was able to be self-sufficient and be able to feed a large group of people. I don't know if she let you know this or not, but she fed 60 people at the Colorado School for the deaf and blind by herself. She cooked a meal totally for them.
0:09:46.2 NG She kept that a secret.
0:09:47.0 BC: Yeah.
[laughter]
0:09:48.8 NG: What did you make?
0:09:49.9 Shelby Craig: I made like three vats of chili cheese toast and two or three gallons of strawberry lemonade.
[laughter]
0:10:00.7 NG: Wow.
0:10:02.1 BC: When she completed her studies there, we figured out that she had pretty well learned her skillset when they dropped her off in the middle of Colorado, Denver, and said, find your way back. And that was her final exam. So at that point, we had a fairly good confidence level that she had arrived, if you will. She was able to independently live by herself if the need occurred. And the need was there, at that point we said, okay, where do you want to go to college? And she chose the school that she wanted to college, and she spent four strong years there.
0:10:40.5 DC: Which is in our state, but it's not local. So that was a good way to just sort of say, you are on your own. You're a control confined environment, but you have to do your laundry and find your way to the cafeteria and your classes and that sort of thing. And that was the one thing that as a parent, and especially as mom I could try and teach her to wash clothes and to cook and all those things, but at this point I had three kids and still working. And so there are only so many hours in the day. And we chose to focus on academics because I felt like she needed to come out of school strong and be able to go into college strong. So the one thing that the Colorado Center helped her with that we couldn't do was to teach her competence.
0:11:29.5 DC: So she learned to cook and enjoy it. She learned public transit and enjoyed it. She learned shopping for herself and actually enjoyed it. It wasn't mom dragging her to the grocery store saying, okay, I need to find this and find that she had to actually make a list and find those things on her own or ask for help. So there's certain things that you can teach the mechanics of something, but that confidence having been blind since birth, she has never seen any of those things. So my washing machine is gonna be different from someone else's and someone else's. And you can teach the mechanics, but you can't teach that confidence.
0:12:06.2 BC: One of the most important things, Debbie and I have always said from day one, when we realized we were gonna be dealing with this, we were not gonna be here forever. We needed to make sure that when we're gone, Shelby could function independently without having the need to rely on somebody else all the time. That was a goal from day one for us. Because we knew any parent who shelters their children, who have any kind of disability, not just blindness, they're not doing a service to their children at all. Because at some point they can't guarantee they're gonna be there forever. So that was a goal for us. We let her experience things that most parents of blind kids didn't. Shelby spent four years at the Huntsville, NASA Space Center for training to work with NASA and rockets and stuff like that.
0:13:00.5 BC: She went to mountain retreats by herself. She flew to Huntsville by herself. We put her on an airplane and let her go. She flew to Colorado by herself. We put her on an airplane and let her go. We're not gonna be here to coddle her. We're not gonna be here to watch over everything she does. We certainly give her guidance like all parents should, but we've also let her be truly independent. And she's fallen, she's got bumps and she's got bruises. But any child does that. And as a parent, that was our goal. We wanted to make sure that she lived as normal a regular life as any other child who experienced growing up.
0:13:38.7 NG: I feel like Shelby's been holding out on us a little bit.
[laughter]
0:13:43.7 DC: She's been skydiving, she's been snow skiing, she's jumped off of telephone poles, scuba diving. She's done a lot of stuff.
0:13:53.3 BC: She's... I don't know if she's told you, she sang the national anthem for the Detroit Tigers twice. She's sang at the Henry Ford Museum before. She's done a lot of things that truly have rounded out her persona.
0:14:06.4 NG: Okay. She's not been holding out a little bit, she's been holding out on everything. I think.
[laughter]
0:14:12.8 NG: Wow.
0:14:12.9 DC: She also did tandem cycling. She got very good at it, and has won several races with her sighted pilot. So she loves adventure sports. But back to the education it really was uncharted waters for us because there were not a lot of other kids that were blind or low vision that we could turn to. I mean it's a scary place when you're just trying to do for your child. And there really are places to turn.
0:14:42.7 BC: And we certainly have taken our knowledge that we've learned through the years and we have...
0:14:47.3 DC: Shared with others.
0:14:50.0 BC: Shared with other parents who are feeling the effects of... The fear factor of raising a child who, you happen to find out that's blind and my goodness, what do you do at that point? And there's a lot of unanswered questions and there's not a lot of guidance out there. It's good to have a support base. It's good to be able to talk to somebody. We, unfortunately, didn't have that support base, but we have certainly reached out to other parents who are experiencing children who have visual impairments at a young age and all the questions, what am I gonna do? How am I gonna go about this? And we've tried to give back everything we've learned. We found out it wasn't there for us. And we certainly don't want other parents, especially young parents to experience it without thinking that they're going through this thing by themselves.
0:15:38.2 DC: We actually, both of us took braille class so that we could read braille visually to help her with her studies. I could help my other kids. Why shouldn't I be able to help Shelby? I'm not as proficient at it because I don't use... That's not my primary medium. But at least we learned it visually so that we can help her somewhat with it. Especially coming up through school, up through elementary and middle, and a little bit in high school.
0:16:02.2 NG: So Shelby, I'm gonna ask you some questions now since we know so much more about you.
[laughter]
0:16:08.3 NG: Do you feel like the path that life took you to this point, do you feel pretty confident that you are ready to soar?
0:16:17.3 SC: I definitely have the confidence that I needed to get. And obviously it's not, I guess solidified because I haven't really been living on my own for years and years like mom and dad have. But I also understand that there's going to come a point when I am going to have to get out into the real world and live my own life. And that basically means that can't not be independent because mom and dad are right and that they're not gonna be around forever. And I look around me and I see all of my peers doing all of these things like getting up, driving to work and my thoughts are why shouldn't I, why can't I do the exact same thing driving excluded for some reason they don't wanna give a blind girl a driver's license. So...
0:17:09.1 SC: [laughter] But that is my hope for the future to be independent and to just spread my wings and fly. The confidence that mom and dad spoke of is something that can only come from actually doing it. And obviously... Again, I don't have that same practice that they have, but I'm determined that I'm going to get that somehow. So that's what I'm hoping for.
0:17:37.5 NG: From the stories we're hearing, it sounds like you are more than well on your way.
[laughter]
0:17:42.5 SC: I've definitely learned a lot from my parents. They've really taught me a lot about myself, about the type of person that... Not necessarily the type of person that survives and succeeds, but also the type of person who others would want to look to. For example, as far as the morals that I've gotten, just the courage that it must have taken these two brave individuals to face the challenges that had to be overcome by raising a child with disabilities. I definitely have a very deep respect for my parents and not just because they're my parents. These are some of the two greatest parents that I have ever known that I will ever know. And I truly do feel blessed every single day to have them in my life. I thank God for giving them to me and I couldn't imagine life without them.
0:18:41.1 NG: I would say the one word that comes to mind through this interview on both you and your parent's side is trailblazer because it sounds like you lit the place on fire.
0:18:53.0 DC: I think she still has a lot of blazing to do.
[laughter]
0:18:57.0 SC: Definitely, there's no question about that.
0:19:00.9 NG: Well, I have no doubt that there's gonna be some pants set ablaze here, you still have a lot of life to go.
0:19:05.0 SC: Definitely.
0:19:06.3 DC: That's the one thing that's frustrating to us now. We've been the cheerleaders in the background, certainly, Shelby has done the work and put in the hours and the studying and the homework and all that, and we've pushed her to do things and not be afraid to go and do and explore. And so now she has graduated from high school, she has graduated from college right in the middle of COVID. And now, for the past two and a half years, she cannot find a job. And that is the most frustrating thing. I can't pick a career for Shelby, we can't. I wouldn't if I could, I don't want somebody to pick my career, I'm not gonna pick theirs. She just... Truly, it's almost like a horse with blinders. She only knows what's in front of her and she's tried to explore every avenue based on her skill set and her training and the degree she has, but it's almost that every door she comes to is closed. As a parent that is incredibly frustrating because we feel like we've done most things right.
0:20:13.0 DC: There's not a lot of blind kids that graduate from high school, there's not a lot that graduate from college, there are some. I'm speaking more of our area. I just don't know what else to do to help her and I feel like we're sort of at the edge of the cliff. She's either gonna fall over or she's gonna jump off and fly because as a parent, there's not much else we can do to assist her but provide guidance. So, she's struggling with that every day and I know like she said, she seen others kinda take off and do their thing. So, I think she feels like the gods just gonna have to place her somewhere wherever it is she needs to land.
0:20:52.0 NG: That's an excellent point. Shelby, how do you navigate this? I know you're having trouble finding employment in the field that you went to school for, but is there a segue to that or is there an alternative for now to kinda springboard you to that career later?
0:21:09.2 SC: Well, it's kinda hard just because like mom said they've always pushed me to explore different opportunities, explore every possible avenue. But I think the other side of that coin is the standards that society sets forth, because in the eyes of society... And not everybody, but a lot of people, they haven't met a blind person before and they don't know what you can do and what you can't do. As a result of that, they tend to put certain standards in place. They're not afraid to raise the bar to new heights because they've never been in contact with someone who's blind. And it's very easy for an employer to look at a resume and be like, "Oh wow, this is impressive," but it's another thing when you actually meet for an interview for the very first time. Based on my resume, it's pretty easy to tell, to distinguish that I am blind just because of some of the documentation that my resume offers. And so naturally, if you have two equally matched candidates, one of which has a disability and one who does not, naturally, they don't have to make any accommodations for this person. So they can just hire the other person who's ready to walk in the door.
0:22:34.7 SC: But if you're a person with a disability, there are certain accommodations that have to be set in place in order for you to do your job efficiently, so they unwillingly or I guess... No, unknowingly, they unknowingly put these standards in place and they're naturally very low because they don't know what blind people can do. And I think the other side of it is, I definitely have had a lot of careers that I probably would have liked to have. My dream job is to be the first blind astronaut in space, but that is a very competitive field and there are 100s of other people who want to get into that field. And unfortunately, I don't have the smarts that society wants in order to break into that, I'm no math genius, I'm certainly no engineer, I don't have any of the skill set that's required. Being a doctor or a military would probably be another career that I might consider if it weren't for the blindness.
0:23:36.9 SC: Don't get me wrong, I'm certainly not angry with God for giving me this lack of sight because I know that I can use it as a blessing. It's certainly been a blessing to me all these years because it allowed me to see things from a different standpoint that no one else can see. Just because I can't see doesn't mean that I can't see. But it is really hard when you're breaking... When you're trying to find ways to prove society wrong. The other thing too is you also... A lot of people don't realize this, but not only do you have to prove yourself to the rest of society who doesn't have a disability, but you also have to prove yourself to your own community. So you have to work twice as hard in order to be an ambassador for the blind, set an example for others while also disproving some of the points made by general society.
0:24:31.0 NG: That's a very good point. Aside from the employment challenges you're facing right now, at this stage of your life, is there any other challenge that is really up there that's causing you to struggle either personally, professionally, with society?
0:24:46.8 SC: I think as far as other challenges, obviously, there are a few that come with blindness and knowledge has nothing to do with it, but trying to maintain image, personal appearance, that sort of thing. My mom and I have had many a discussion about this and I know that it's something that needs to be instilled in me because it's what society expects of me. I mean, mom will be the first one to tell you there have been plenty of times when we have bashed heads over something like jewelry, earrings, makeup, that sort of thing. And I always tell her that... Whenever I act like I'm irritated with her, my irritation is not towards her directly because I feel like a lot of times it's me versus the rest of the world. And I know there are others who think like that as well. So obviously when it comes to certain mannerisms that can be overlooked by the blind community, they're much more noticeable within the community who does not have disabilities. Naturally, we are part of the minority which means that we have to conform to the rest of society. And unfortunately, when it comes to accessibility and that sort of thing, though like I said, we're in the minority, so society doesn't really have to go out of its way in order to accommodate for us.
0:26:13.8 BC: One of the things Shelby brings up is something that we battled with for many years and it's just recently being solved. Accessibility was not very prevalent when Shelby was first born, you understand. She was 27 years old, now, 27 years ago, there was not much accessibility out there for her. Electronics and computers, accessibility items have just recently and I say recently like in the last 10 years, have caught up to where society expects things to be in place to where you don't necessarily have to have specific skill sets to do jobs. Another thing that we battled with is logistics, how to get her to different jobs, different areas, different locations. 27 years ago, 25 years ago, that didn't exist, it was very limited. A lot of avenues have been opened with the advancement of technology, there's really no reason why certain jobs that she was unable to do when she initially came into the world now are not within her reach. The accessibility has to come to that point, Steven Jobs did a lot of that when he initially started working with accessibility issues with Apple. Other computer platforms have reached that goal and they've started moving forward.
0:27:27.7 BC: There's a lot of things that Shelby can do today that she had no hope of doing when she was initially born. I think technology will only improve that. I know she says she would love to be an astronaut, she makes a very good point. When you're in space, it's dark anyway. So anything that you can do in space, you can do by feel, you can do by audio cues. You don't necessarily have to do to see what they're doing, those times are over now. The technology is there where she should be able to do just about anything she wants. Yes, she wanted to drive a bus at a young age but I don't think that's coming, but it may. We have self-driving cars that are actually there now. Technology has opened up so many avenues and so many windows for her. I would venture to say in 10 years, there's very few careers that she could not do.
0:28:18.9 NG Brey, I'd love to know if you have any questions, comments or thoughts.
0:28:22.6 Brey: Oh boy, I think as someone else who is blind, I think it's incredible to hear about how you guys were able to expose her to things that most parents who have a blind or visually impaired or whatever child are scared to do. I lost my... When I was like 21-ish, is when my vision really started to go. And even now at 27 years old, my parents are terrified of me walking down the street by myself. So, it's just incredible to hear that and to be able to know that you guys did such a good job of exposing her to the real world, I guess.
0:29:07.9 DC: Well, that was our fear Brey. We just did not want to have her live in a bubble and then all of a sudden, we're gone or not in the picture and now she is terrified to go out and explore the world. So that was a fear, but thank you for saying that.
0:29:23.4 Brey: I guess, what advice would you guys give to parents who are scared of taking that first initial step or especially parents whose children lived with them all throughout high school and everything and now, their child wants to go away for college for the first time, what advice would you give to parents?
0:29:43.0 BC: Most parents need to understand that this is not a blind child, this is a child who happens to have no vision. You don't treat them any differently than you would your normal child. Yes, there are precautions you have to make but you don't put the child in a bubble because children need to experience the fun, the danger, the happiness of doing things independently and things that are fun. We have... Through all of the years that we've taken Shelby to the different hospitals throughout the country, she's been to Johns Hopkins, she's been to the hospitals in Michigan, we saw parents who sheltered their children and we felt so sad for those kids because they were not able to be kids. That's the most important thing, kids don't need to grow up in isolation, they need to be kids, let them enjoy life, let them get their bumps and bruises. Shelby's got a fantastic elbow scar, she'll show you any time where she fell off a monkey bar playing with her twin brother, but we did not limit that. We did not say, no, you can't do that because you're blind.
0:30:51.9 BC: We said, go have fun. And if you get hurt, you're young, you'll get over it.
0:30:57.5 DC: You'll heal.
0:30:57.6 BC: Yeah.
0:30:57.8 DC: And we've talked to so many parents who just would look you in the eye and say, "How in the world can you let your child go to camp? And why would you do that?" I said, because she needs that experience of being a, with other kids and b, to be a kid and go do kid-like things. The other piece of advice I would offer is to have that parent watch or be around or go to or meet other blind children and just watch them in action because they're amazing kids and they are kids, first of all. They wanna go and do and feel and touch and smell and laugh and play and do all those things that kids do and you can't cheat them out of that experience. So, letting them go to a camp with other blind kids where there are supervisors, if my kid was sighted, they're liable to have an accident. Maybe that sounds awfully foolish on my part.
0:31:58.2 BC: I'm big in military history, and one of the guys who have put a lot of quotes out there that are very poignant was George Patton. And he said one time, "Don't tell somebody what to do, tell them what needs to be done and let them figure out how to do it." And that's basically what we did with Shelby. If Shelby wanted to go play, go have a ball, go do what you wanna do and learn how to have fun. And yeah, you're gonna get nicked and you're gonna get cut and you're gonna get bruised, but you know what? You had fun. That's why she skis down side of mountains and that's why she walks in big cities and does public transit, she needs to experience that. And we never said no.
0:32:43.9 DC: But trust me, as a parent, it is terrifying. I mean, I...
0:32:47.9 BC: Oh yeah, close the door behind her and then watch us cry.
0:32:51.0 DC: I think back on days and I'm like, how in the world did I let her do that? But I needed to let her do that. Shelby, did you have something you wanted to say?
0:33:00.0 SC: Not that I can think of.
0:33:02.9 NG: Brey, I hope that answered your question.
0:33:04.9 Brey: Definitely. I have one more or two. Just with Shelby having a twin brother, did you often... Like in school or socially even, did you often feel like he was put under, not stress but having to sometimes be the advocate for her? And how did you kind of deal with that as far as her being the same age as her brother?
0:33:29.0 BC: So her twin had his own issues when he was born and he had his own difficulties to overcome also, it's surprising. They didn't go to school together because Shelby was in an isolated school away from him...
0:33:45.0 DC: Up until sixth grade and then in sixth grade they came back together in this district. But you are right, he was kind of looked upon as the big brother and so if they were in the cafeteria, people would say, "Hey, watch out for your sister over there, don't you wanna go sit with your sister?" And that type of thing. So there was some of that with him advocating for her and I think he just... That's all he knew was I have a blind sister and he always had a big heart, so he was always willing to go out and help and include her in activities like when the kids in the neighborhood were playing. It was...
0:34:21.9 BC: Even her younger sister. There was animosity, sister fights between them. But even today, her younger sister will tell you that she always looks out for her and she always is concerned about her well-being. Just like her brother is now, they're far off from home. So, they don't talk as much as they used to, but you know that there is a connection there and you know there is a love there that just can't be expressed. And it's like twins, you know there's a love between twins that parents never understand but it's there.
0:34:57.7 DC: Well, don't misunderstand me. They loved to play hide and seek when they were little and just thought it was the most fun thing to do to hide things from her and then say, "Shelby, find it. It's right here."
0:35:07.8 BC: Blindy Findy.
0:35:08.9 DC: Yeah, they called it Blindy Findy.
0:35:09.3 SC: Yep, there we go. I still play that game.
0:35:13.0 S4: That is too funny.
0:35:14.1 Brey: It was just... It sounds like a game I play every day.
0:35:18.7 SC: Yeah. Yeah, it's a everyday thing.
0:35:22.9 NG: What would you say to parents? I know parents who have children with disabilities harbor a lot of guilt and it becomes a driving factor in how they raise their kids. What advice do you have around that?
0:35:36.0 BC: We knew... Well, let me go back. We had a lot of that same guilt early on, the question was, What did we do wrong? What was our part in her blind? And we quickly came to the realization after discussing it with a lot smarter people than we are, that this had nothing to do with us. In Shelby's instance, we were told she was struck by lightning twice on a sunny day. Once we got over the emotions of having a child with a disability, in this case, blindness, we couldn't do the poor, pitiful me. We had to put our shoes on, put our gloves on and go out and fight for her. A lot of our anger and a lot of our sadness was quickly replaced by our overwhelming desire to advocate for and make sure she had everything that she needed to be successful in life. And quite frankly, we didn't have time to worry about the guilt or the sadness or the emotional factor of us being the parents of a child with a disability. We came to the conclusion like, alright, suck it up buttercup. Now, we gotta do what's right for her.
0:36:49.3 DC: We have work to do.
0:36:50.5 BC: Yes.
0:36:50.6 DC: And you can't sit back and worry about the what ifs because you have to deal with the what is and trying to... There are people who would think we are absolutely lost our minds to haul her back and forth to Detroit over a 100 times. But our thought is if technology and something down the road can help her, that's her option later and that's her torch to pick up and carry on. But we had to provide for the here now, and that's really all that we've tried to do all these years is we have a problem, we try to solve it, we have something that needs to be done, we put it in front of her and let her choose to accept the challenge or learn a way around it.
0:37:34.9 BC: You're not guaranteed... The Bible says you're not guaranteed your next breath, you're not guaranteed to live another second longer than what you've already lived. We can honestly say that if we took our last breath before this interview is over, we've done everything we could for her and given her every opportunity. And we feel very confident that she could live independently if something happened to us, and that's the greatest gift we could ever give her.
0:38:01.9 NG: I think you guys have done an amazing job.
0:38:05.0 DC: Thank you.
0:38:05.9 BC: Thank you.
0:38:06.3 DC: Well, again, it's just like Shelby with the work, we just instill the passion and here's an opportunity, but she had to pick up the ball and run with it. So, kudos to her.
0:38:18.2 NG: Agreed. Shelby, we thought you were an amazing person before tonight, then we hear all this amazing stuff that you've done, and I'm like, wow, we're all blown away right now.
0:38:27.9 SC: I don't think I could be where I am today without the support of my family, so I just wanna extend my most sincere gratitude to my family, my parents, my brother and sister. I know I caught on everyone's nerves at times, but I'm very happy that I have people in my life who I can honestly say love me and care about me and want nothing but the best for me.
0:38:51.0 BC: If you wanna see a fun video, go look at Shelby singing with Jim Leyland on YouTube.
0:38:57.3NG: What!
0:38:57.4 BC: Yes.
0:38:58.2 DC: They sang a little duet right before she sang for the Tigers.
0:39:02.9 NG: Oh my gosh. Now we're gonna have to look at this Shelby [0:39:06.0] ____.
0:39:07.6 SC: I won't be there when y'all watch it, I hate my voice on recordings.
0:39:12.8 S4: Awesome. Well, I wanna thank you all for your time, this was amazing. Brey, do you have anything else to add?
0:39:19.0 Brey: No, I don't think so. I just... You guys are awesome. That's all I wanna say.
0:39:23.5 BC: Thank you, thank you very much.
0:39:25.2 DC: Thank you for letting us participate in this...
0:39:27.4 BC: Yes.
0:39:29.0 DC: It's easy to let all this get bottled up all these years and you do just move forward and put the next foot in front of you and keep moving and keep doing. We're like little gerbils on the wheel, but thank you for letting us express our thoughts and I appreciate that being a part of this.
0:39:44.9 Brey: Oh, the pleasure was all ours, really. Thank you so much.
0:39:50.9 Dr. Patrick Droste: The podcast is called Through Our Eyes. Make sure to like and follow our Discord channel, Facebook, Instagram and TikTok and let us know if you have any questions or have a topic you would like us to cover. We have tremendous things planned and we hope you tune in again for our next podcast. This is Dr. Droste saying night to all of you. On behalf of our staff, the PRRF, thank you.
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