Bailey Wallace: The sibling experience and being at peace with the diagnosis.

The family conference was two weeks ago and it was amazing!   My theory is that siblings of special needs children are amazing human beings and my guest on the podcast, Bailey Wallace, proves that to be a fact.  She has a daughter with SKDEAS, plus two other kids that are extremely supportive.  She talks through the exhaustive job of balancing life with three kids and ensuring they all lead full lives.  Bailey may be the most positive person i've spoken to about this diagnosis, so I hope her talking about her struggles to get to the positive place can benefit a lot of parents in our community.

Important Links:
SKDEAS.org
https://www.youtube.com/watch?v=62YEMALYh5s
Facebook: WDR26-Related Diagnosis
Instagram: Skrabandeardoff


You can reach Emily Beauclair at:
SmilesIncludedPodcast@gmail.com
Instagram: SmilesIncludedPodcast

Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.

Transcript

PODCAST INTRODUCTION: This is Emily Beauclair and you're listening to the Smiles Included podcast, navigating through life with our rare disease superheroes. Hi everybody. Today is August 14th, 2022 and the Skraban-Deardorff Family Conference was two weeks ago now and I have a backlog of guests that are going to be coming on this show and sharing their stories or maybe giving us some of the information that they shared with us at the family conference. 

I'm hoping that some of you that weren't able to attend will feel like you're getting some of the support and information that we received at the conference. One thing that I absolutely cannot accurately put into words is what happens with the kids meeting each other. There was just an instant bond with many of these kids and I think a lot of us parents just felt very comfortable in the room. You know, our kids have behaviors and they're very touchy-feely and loving but everybody embraced it. These kids could just be who they are and everybody celebrated it and that was just an amazing experience to have as a parent and just kind of some relief of letting our kids be kids and I just felt a sense of normalcy of just letting them play with friends which I feel like I never get. 

It was just comfortable to be in the room together. One thing that I learned at this conference is that the parents of Skraban-Deardorff kids are fierce and they're protective and not just when it comes to their own kids. Multiple parents that I spoke with said that they felt that all of the kids that are impacted by Skraban-Deardorff feel like their kids. We so badly want them to reach their potential. We want to celebrate their success and even when we know that someone's going through a hardship, our heart breaks for the parents and for the kids as well. For those of you that could not attend, I hope you're on our social media sites. I will put all the links in the show notes because there's just been a huge increase in activity and photos from people all over the world and I will also include a link to the YouTube video that is a must watch. Just make sure that you have lots of tissues by your side. If you're not on social media, the foundation launched a new website, skdeas.org, which is fantastic. And there are people’s names on there that you can always connect with. My information is in the show notes. Even the guest today is a perfect example of how all of us want to support each other.

Another thing that really stood out at this conference was how amazing the siblings are. There were a lot of siblings in attendance. They didn't have to be there. They did not have to sit there for hours listening to genetic presentations, but they wanted to be there to support their parents, their family, and their sibling that has Skraban-Deardorff. They also want to see other kids that are impacted. It's just further proof of my theory that siblings of these rare children are amazing human beings and will go out into the world and be advocates. Speaking of which, that is why I wanted to talk to my guest today. Bailey Wallace is the mom to three amazing children, one of which is impacted by Skraban-Deardorff. So she talks to us about the sibling experience, but goes into so much more and I found her story very inspirational. Please enjoy. 

INTERVIEW

EMILY: Welcome to the podcast, Bailey. I know you were at the family conference and I definitely want to talk more about that, but first tell me a little bit about your family and your daughter. 

BAILEY: Okay, well, me and my husband live in the Los Angeles area and we have three kids. Sebastian's our oldest. He's 17.5 and a senior in high school now. And then we have the twin girls, they're 9.5, Brooklyn and Scarlett, fraternal twins, of course. We were born and raised here in Los Angeles and, you know, we both work full-time. The kids are in school. We're a typical busy family. 

EMILY: Yeah, and you traveled a really long way to get to the conference all the way in Philly, so a lot of families weren't able to do that, so that's pretty nice. And I love that you brought your entire family, which is pretty amazing. 

BAILEY: Well, I felt like we all had to come, even though, you know, it was difficult to afford the trip and, you know, we did have like a GoFundMe and some family members kind of give us some gifts to help us make it happen. But when we talked about maybe me and Brooklyn going, it just was kind of out of the question because this is something that has affected all of us and the whole family's been on board with this whole journey and I think it was just really important to include everyone. 

EMILY: That was one of the things that I was most amazed about was the number of siblings that felt like they needed to participate and I will tell you I was paying special attention to your family because I am a twin as well, so it was interesting to see the dynamic between your daughters and I definitely want to talk a little bit more about that. But first, can you give me some of your thoughts or takeaways from the conference? 

BAILEY: You know, I really wasn't expecting to learn too much or anything like that or, you know, I was just mostly there for the community. Just these other parents that we've been sharing our lives with, I was just very very eager to meet the other kids and it was just really wonderful to see the other kids and just meet them and see what they're like. I think that's what we were most excited about and, you know, it was just really wonderful to be there. 

EMILY: Do you have a favorite experience that you can share with us from that weekend? 

BAILEY: I think the moment that we started including the dance parties in between each of the speakers is when I really saw all the kids coming to life and just like really coming out of their shell and I think that was my favorite part, just seeing how much they love dancing and just like being their true selves. 

EMILY: Yeah, I think a lot of the sitting and listening to the genetics portion was a bit much for a lot of the kids. I was very impressed that a lot of them sat through it. So I was glad that they put in some of those dance parties. What were some of the beneficial things that you learned from the conference? 

BAILEY: Well, I think I was really interested in seeing what it's like for the older kids. You know, most of the diagnosis seemed to be younger children. So I was very interested in anyone who's older than Brooklyn, just, you know, learning about what they're like and what their life is like and what they do. And so that is what I found very interesting because, you know, as Brooklyn being one of the older kids, I think we're a resource for a lot of the younger families, but there's not as many older kids to kind of to look at and just, I don't know, I guess just get an idea of what life will be like. So it was really interesting to meet the older kids. 

EMILY: Yeah, I look to you as having one of the older kids. So I love to hear, you know, your stories and what you're going through. Because I think we all just want to know what our kids are going to be like as adults. And I unfortunately don't think any of us have that answer yet. But we do know that they will be very happy. 

BAILEY: Yes, like I just love how happy they are. Sometimes I wish I could just be that happy. 

EMILY: I know. Okay, last question about the conference. Is there anything that you think you're going to be doing differently, like maybe with your therapies, just based on what you heard at the conference? 

BAILEY: Yeah, just hearing Sherri, Allie’s mom, kind of talk about the ABA therapy. You know, I know we've done some ABA therapy therapy to some extent. And we didn't follow through with it because it just could be a little bit much. But just seeing and hearing about the life skills that it was teaching Allie, it really makes me want to give it another try. And I know Katie said that she would help us with like this letter that we need to be able to get those therapies. So I'm giving it a second thought. 

EMILY: Same. And prior to going to that conference, my family was very against ABA, just because of some of the controversial things that we've heard about it. But just hearing how so many of the Skraban-Deardorff kids benefit from ABA. And it sounds like it has changed a lot since some of what I've heard about it. So I definitely am going to explore it a bit more. And Sherri is actually going to be on a future podcast because she spoke about potty training at the conference. And that's something that a lot of us as parents are really struggling with. So I'm hoping that some of her advice can help us all out. 

BAILEY: Yeah, I mean, same here. I think Brooklyn is one of the older kids that is still not potty trained. She's definitely the only one in her school that's in diapers. And it's something that I mean, I've successfully potty trained two kids. So I kind of know what it takes. And we've tried a lot of things, but it just, she does, she doesn't have any cues. We've tried with a lot of tears, a lot of frustration. So hearing what Sherri had to say on potty training was really helpful. And it just kind of gave me the second wind that I needed to want to try again. 

EMILY: Yeah, I hope you're successful. I can't imagine having to deal with diapers as a teenager. And I'm hoping that we're not there. It's just, yeah, my son shows no signs of wanting to be potty trained or even caring. So I get where you're coming from. 

BAILEY: Yeah, and then we, you know, as a Brooklyn being a female, you know, we worry about other things that eventually will be happening with menstruation. It just, that's something I would love to talk to some of the other parents about, you know, that's just, just something we're thinking about that we know is going to happen. And I'm like, well, maybe it's better she's still in diapers. I don't know. We're not really pushing the potty training right now either. We've just kind of accepted it, but I really need to like kind of get back on it again. And I just wonder if it has something to do with muscle issues, you know, the hypotonia and all of that, because she just seems to have no awareness. Just looking at me straight in the eyes while going to the bathroom. And, you know, the other kids would like hide behind couches and just show some signs. And she doesn't seem to have any bladder control. I don't know. 

EMILY: Yeah. 

BAILEY: So we'll see. 

EMILY: Yep. I'm right there with you. 

BAILEY: Yeah. 

EMILY: Oh, God, I'm not looking forward to that. But I think we're going to, we're going to attempt it over the next couple of weeks and see how it goes. 

BAILEY: Yeah. Yeah. I totally gave up on it for a while. But I know it's summertime. So whenever it's summer, you know, I'm like, oh, this is a good time to do that. But I didn't try this summer. 

EMILY: Yeah. 

BAILEY: Maybe next summer. 

EMILY: So just in talking a little bit more about Brooklyn, how old was she when she was diagnosed? 

BAILEY: She was 4.5 or 4, so that was 2018. Oh, wait, no, she was 5. OK, so four years ago, she was diagnosed in 2018. So she yeah, she was 5. 

EMILY: When you got the diagnosis, what were some of the things that went through your head? 

BAILEY: Well, you know, so for that first five years, it was just kind of an endless search of like, what's going on? What is this, you know? And so. Some neurologists were throwing around the term XALD and it's degenerative. It's pretty serious. It's, you know, not a very long life expectancy, pretty horrible disease. And so when they were throwing around this term and testing her for it, you know, I was preparing myself for the worst case scenario. And for a few months, it was a very dark time while we waited for those test results. And I just kept thinking, she doesn't look like she's, it's degenerative. She looks like she's making progress. But then they say it's got a lot, like a late onset. So it kind of happens later and then it happens very quickly. And then I saw the movie, Lorenzo's Oil. And so it was a very difficult time. So then they came back, said it's not XALD. I'm like, oh, thank goodness. And then I kind of just accepted like whatever this is, it's going to be better than what I thought. 

EMILY: Yeah. 

BAILEY: So then shortly after that, they said, OK, there's one more test we can do and we did the test. And then this popped up. So when I got the diagnosis, I was relieved. I was OK with it. At first. And then it was just kind of hard, you know, at first wrapping my mind around it. I had a hard time. I hate to admit. It was just, you know, I started kind of grieving a future that, you know, I thought was there that it was different now. And it just took me a little while to kind of embrace it. And so it's a little shameful and a little interesting how hard it was for me at first. Like it was good and then it was bad. And then it got a little bit worse.

But now I have totally accepted it and not only have I accepted it, but I am thankful for it. And it's a blessing. And, and I, you know, I couldn't have done any of this without my faith in God. But now I look at Brooklyn like a blessing to her family. I'm thankful for, for this diagnosis. And I never thought I could say that, but I'm truly at a place where I feel like she has made my marriage better. She has strengthened our family dynamic. She has had positive effects on the way our family communicates. And she's truly blessed us. And I still am amazed that I feel that way to this day, considering the roller coaster I've been on. 

EMILY: You're bringing tears to my eyes. I don't know if I'll ever be where you are. I do celebrate Joe, but I think I'm always going to be very, very angry and never thankful for this diagnosis. But I am thankful for how much, for what the light that Joe brings to our lives that he might not if he didn't have this diagnosis. So there's that. 

BAILEY: Yeah, that I mean, to be honest, I was depressed for a little while after the diagnosis. I really did crawl into a cave and just, I cried a lot. There and and I do feel shame about how why me, why me? I felt for a long time. Like I was just like, why can't things just be normal? Why are things so hard? Why am I at the doctors all the time? Why is she always crying? Why can't I get any sleep? Why me? Why me? And I got real depressed for a while and. And it was just so hard. 

But then, and I know it's hard for me to talk about this to some people. But, you know, with all the hard times, I just started leaning into God. And that's where I found all my strength. And so, and our whole family's kind of changed directions. I mean, we were always kind of churchgoers, but now we're just like, we spend a lot of time at church. We volunteer all the time. We serve, we volunteer on campus. We belong to Bible study groups. Our kids are really active in the church. And so through Brooklyn's diagnosis, I started leaning into God, into my church for support. And I now have a peace inside of me that I never had before. 

And then just to be able to say that I'm thankful for the way that she is, this kind of feels like a miracle because I just never thought I would get there after being so depressed four years ago. And I guess it makes it a little bit easier, the fact that I have the other two children because my son's applying for colleges and he's going through all that, that I get to experience with him. And I have a son and I have a daughter and I get to experience these different things through them. And then I also have Brooklyn, who's my little angel. And we have our struggles, but I think I get to experience a little bit of everything, having this special child that has made me act different and live a different life. And then my neurotypical children that get to have normal experiences–normal, quote, unquote. 

EMILY: That's a beautiful take on this. And I hope that a lot of us can get there someday. What kind of relationship does Brooklyn have with her siblings? 

BAILEY: It's a very sweet relationship. When I first found out I was having twins, I was terrified. And I just thought, oh my goodness, this is a lot. And it was a lot. And I would just think, oh, this is just too much, twins on top of a special needs daughter. It's too much. It's just a lot. But then as they got older, I realized, everything happens for a reason. And I was so thankful that Brooklyn had a twin sister because she's always there for her. It's like she always has a partner. It's like, they're in the same grade. So they kind of have the same schedule and they kind of are interested in the same thing still, kind of. They sleep in the same room. And then there's not a huge age difference or anything. So it makes sense for them. And I guess if I had a daughter and a son and maybe they wouldn't want to share a room or I don't know, it just kind of, it just really kind of works.

And Scarlett's so helpful with her sister. I think also Scarlett enjoys having someone around all the time, that she, so she doesn't feel alone. So she doesn't have to sleep alone in a room so that she kind of has someone she can kind of play with and tell her what to do. And Brooklyn doesn't argue with her or push back. So when she wants to play with her, she can kind of play with her and maybe boss her around a little bit. And Brooklyn just goes with the flow, you know? And I think Scarlett does appreciate having that playmate. But then also expresses to me that she wishes that she just had like a sister she could talk to. And so, you know, I do realize that, you know, she wishes she could stay up late at night talking with her sister, maybe talking about boys or TV shows or whatever. And she doesn't have that. But they still very much play together, interact with each other. 

Scarlett gets annoyed. She gets pretty annoyed when Brooklyn's like screeching or maybe we're not communicating. We don't understand what she's trying to communicate. And it can get very frustrating. Brooklyn cries really loudly sometimes. She doesn't like that. Brooklyn gets frustrated and just makes her loud noises. Scarlett really doesn't like that. 

But Sebastian, on the other hand, has a very sweet way with diffusing her when Brooklyn gets very upset and she kind of will get very loud for about two minutes. And maybe I get a little panicky and I'm like, I don't know, I don't know what you want. And then Sebastian can come in in his very sweet way and just like, he just holds her or he makes her laugh. And like I tell him, you just have a special way to diffuse the situation when he sees that I'm so frustrated. And he's just very supportive of her and very sweet with her, very patient and kind with Brooklyn. And they have a really nice dynamic. And it's funny though, because Sebastian will kind of pick on Scarlett like brothers and sisters do. But he doesn't pick on Brooklyn. But he picks on his sister in a very cute kind of healthy way that I think siblings do. In a playful way though, they don't really bicker and argue like I did with my brothers and sister. I tell her he picks on you in a healthy amount. Like brothers and sisters should. So you can get a thick skin, you know. 

EMILY: Exactly.

BAILEY: They're all really great with each other, actually. They don't really fight or anything. I think Sebastian and Scarlett see that sometimes we kind of have our hands full. And I feel bad to say that they can be a little accommodating. When they see how much we deal with, they try not to be difficult. Yeah, I hate to use the word accommodating because they're children and they should be children, but they're very understanding. 

EMILY: I am convinced that siblings of these special kids are better people because of it. From what you're saying, that sounds very true. Both of your other kids, well, I mean, all three of your kids sound amazing, but just the relationship that they have and understanding what you and your husband are going through, I think it's very special. So how does Brooklyn communicate? 

BAILEY: I think that's her biggest challenge. She has sounds, she has some words. She has a few really short sentences like, she likes pop cereal. She could say, “I want pops”. She could say, you know, “hi, dad”, “bye, mom”, pretty clearly. But there's some other sentences that she says that maybe we understand, or she's copying someone what they're saying. And so I can understand the intonation in the sentence and kind of the pattern of what I think she's trying to say, but it's not clear to anyone. Like maybe it's a line from a song and we know what she's singing and we could hear that she's really trying to say the words, but she doesn't know how to enunciate. 

So she has some sounds and she uses quite a bit of sign language for, you know, some basic needs, food related things and stuff like that, all done, more. She has her communication device, which she doesn't like using. The school is really pushing to use the communication device, but it's difficult to navigate. And she does know how to navigate it, but it's not the type of communication she prefers to use. So it's mostly a series of sounds, gestures, some sign language, pointing and grunting, a little bit of all of that. 

But it's probably our biggest challenge that I wish I could change is just being able to communicate with her. Like today was her second day of school and she came home, got off the bus and she was just blah, blah, blah, blah, blah, blah, just some babbling and I'm just like, yeah, yeah. And I just really wish I knew what she was trying to tell me. And even if I got out her device, she probably, I don't know. So I ask her common questions like, oh, did you go on the swing? Oh, did you see your friends? Did you go on the bus? And she'll babble a little bit and I go, oh, yay. 

EMILY: Yeah. Do you think that by having a twin sister, it's helped in her overall development and communication? Or do you think she would be where she is right now, regardless? 

BAILEY: I think it must have helped because not only does she have a constant, she's got someone with her all the time who's talking. And then I'm always talking to the other kids. So she's hearing a lot of language in the house because when it's just me in Brooklyn, I feel like I have to try really hard to be like talking or else it's just too quiet because she doesn't talk. And there's a lot of eye contact or whatever. But, so since Scarlett likes to talk a lot, you know, there's a lot of language going on in the house. And I think also with Scarlett, she was getting exposure to a lot of age appropriate activities, you know, children's museums and the type of indoor play places that are, you know, good for her age that are, you know, age appropriate. So I think, you know, and it's a good thing that Sebastian still is very young at heart because he still likes doing things like going to children's museums with us and doing activities like that that little kids would like, like, all the activities. And so, yeah, I think it must have helped because she was getting a lot of stimulation that was age appropriate.

EMILY: So it sounds like Brooklyn is in the same school as, at least Scarlett. 

BAILEY: Actually, she goes to a different school. Yeah, Scarlett’s school, which is right around the corner from us, said that they don't think, they couldn't give her the kind of support she needed and the kind of accommodation. So she goes to a different school across town and the bus comes and picks her up in front of Scarlett’s school in the morning and then drops her off at home in the afternoon. So she goes to a different school. 

EMILY: Do they share any of the same friends? 

BAILEY: So they are in Brownie Girl Scouts together. And, but I wouldn't say they share the same friends because Brooklyn doesn't, I don't know, Brooklyn doesn't really seem to have friends. Maybe she has acquaintances, but... But Scarlett has a lot of close friends. She's got some besties. And I would say that Brooklyn might follow them around during a Girl Scout meeting and they try to include her in some activities to make her feel included. And the Girl Scout troop is very good at, you know, being inclusive with Brooklyn and talking to her and not letting her feel left out. But she just kind of parallel plays with them and just follows them around. 

EMILY: So I'm sure Scarlett and Sebastian have a lot of friends with a lot of questions and how do they treat Brooklyn? Is it kind of a normal relationship where she's just, you know, the kind of the annoying sister that tags along? 

BAILEY: I think a little bit with the Girl Scout troop, since they really try to instill like certain types of skills in them. The Girl Scout leader is very adamant that, you know, you know, you're being all inclusive, retreating others with disabilities, with kindness and that sort of thing so that they're really good and patient with her. But sometimes Scarlett will be like talking to her friend and they'll be a little annoyed by Brooklyn, maybe being so loud and her screeching and they both get annoyed. So yeah, maybe like kind of like the little shadow following them around. Or like if we're playing somewhere with a friend at the mall, I'll be like, include your sister, you know, and they do, but maybe they don't want to so much. Maybe it's a little annoying. 

But Scarlett's still just so understanding and just so, she's very good at just trying to have Brooklyn be involved. Maybe because she doesn't want to hear me say, hey, include your sister. Or maybe she just actually realizes, you know, that, you know, Scarlett's a sweet girl and I think she probably just realizes that it's important for Brooklyn. Brooklyn has feelings and she doesn't say much, but she's very expressive in her eyes and her expression and so you can kind of tell if she's happy or sad or having a good time. 

EMILY: Do you think your other kids get a little bit jealous of all the attention that you need to give to Brooklyn? 

BAILEY: I, you know, when Brooklyn was little, she definitely commanded all of the attention with the amount of pain she was in and the crying and the doctor's visits and the ER visits and everything going on with her and them seeing how stressed out I was. I think they tried to stay out of the way and quiet and I used to feel really bad back then about how, you know, when Brooklyn was just crying and crying in pain, like she commanded the attention and the kids just really had no way to, you know, get in my face when it came to that sort of thing. But now I think since Brooklyn's so quiet, maybe she's the one who kind of gets pushed to the side a little bit and then the other two kind of maybe, you know, like at night we're playing board games. We play a lot of board games. Brooklyn's probably the one who feels a little bit left out, not being able to play the board games that the other four of us are playing. And every now and then we'll try to play something that we know she can play, like Memory or we play Lotería, something that Brooklyn actually can play and understand how to play. But most of the time Family Game Night is more like just the fun games that we like to play with the, you know, with my other two kids and my husband. So sometimes I do feel like lately Brooklyn maybe isn't getting as much attention as she used to. And it's more about the other kids. 

EMILY: Is there any advice that you have for parents that have one child with Skraban-Deardorff and then other children? 

BAILEY: We really do. We spend a lot of time out of the house just doing different things. Just we really like museums and stuff like that. But I try my best to, I don't know, let the other kids, to do something that makes everyone happy. Like we went to Vegas recently. I was there for work, but we all went and we kind of let everyone pick something they wanted to do. Now the boys went off and they watched a basketball game. My daughter wanted to go on this little gondola boat and we did the Children's Museum for Brooklyn. But everyone kind of enjoyed all the different activities, but then everyone kind of felt like they had a say. 

And then the same with Philadelphia. We let my daughter pick the aquarium. And my son was just really interested in like eating, but like kind of also wanted to do like the art museum. And so we just made sure that everyone, oh no, he wanted to do the Lego Discovery Center. He likes Legos. So I just wanted to make sure everyone felt like this trip wasn't revolving all around Brooklyn. And just, I don't know, kind of also taking the temperature, you know, just talking to the other kids. Like how do you feel about this and like letting them know how much I appreciate everything they do and just really communicating with them and asking them how they feel about stuff. And also just realizing that they're pretty happy and they're pretty okay with whatever's going on because I guess they see how hard we try, both of us, to make sure that everyone's happy. 

And so just keeping a good balance. I really let my son get invested in everything he needs, like football and just making sure that I give him the childhood he still has, you know, just, um, just asking like what kind of support do you need like what's important to you, okay, I'll support you in your football activities as much as you need and just really making sure I go out of the way to make that happen for him and then same with Scarlett if she really wants to go on a playdate, you know sometimes I just put my own needs aside and just make sure I give them their childhood experience. 

EMILY: I mean just listening to all of the things that you spouted off what you did in Philly, what you did in Vegas, it sounds like it sounds somewhat exhausting to me but it sounds like you are just giving all of your kids, all three of them, a very like normal typical fun life. 

BAILEY: And I think that that probably has a lot to do with my own childhood trauma and being, being raised in a broken household and just how difficult my childhood was and I try extra hard to make sure my kids get a happy childhood. 

EMILY: Well I can tell you that watching your children sit through the family conference, they are just lovely and you're definitely doing a good job and I just love hearing that you were just working so hard to have a normal existence for all of your children. 

BAILEY: Yeah you know it is a little exhausting I think we, both me and my husband, push ourselves really hard to we were a very active family though we really like to be out and about and doing things and we get up on a Saturday morning and go for a hike and then go out for lunch and then go to the mall and we're not much of, like we're not much of homebodies and we just like to have activities and just kind of do fun things and we both really still enjoy doing kids stuff like even just renting bikes and going for a ride on the beach, aquariums, museums, things like that. We just like being out and about and yeah we're tired, we're exhausted, but I don't think I would have it any other way.

Yeah, we're so tired and that sometimes like when I'm driving my three kids around in the morning and dropping them off at school I'm just like wow this is a lot but then having three kids and just trying to keep them happy. Maybe it's a good thing I don't focus on myself too much because like you know when I get caught in my own mind, I can just like stress myself out and just worry and they keep me young and I just really love doing all this kid stuff and like I think I'll be sad when they're all grown up and out of the house and I don't have this day-to-day hustle and bustle. I think, I think I really like all the noise.

EMILY: Yeah, and just the out-of-the-house thing I'm just gonna prod on that a bit. So your, your future when you look you know 20 years down the line, where do you see Brooklyn?

BAILEY: I see her still being at home with me and my husband. I see us trying to travel and maybe with her at our side the whole time, I don't know, and then I just, I don't think she'll live independently. I think she'll be with us and maybe that will be great that we could still do maybe if we're still young at heart we'll still want to do museums and aquariums and things like that I know that's something we still really enjoy now I don't know how that changes. I know we would love to travel one day and I don't know what that would look like with Brooklyn. We like to go on long walks and you know we can't always do that with Brooklyn. It’s something that, I don't know, and then of course I think you know who's gonna take care of her one day. Try to, I don't mean to but I jokingly I joke with the kids oh well she's gonna be living with you one day, and and it you know I feel I know it's a burden that I don't want to put on them but it's a reality and I do feel guilt about that but I know that I would keep her with me as long as possible. But then I also know that if I didn't have like I always knew that once the kids grew up and moved out I would just get dogs and just like I need something to take care of right but now I just I have Brooklyn which is better than a bunch of dogs and she's always gonna need me and she's always gonna be with me and and I won't have an empty nest. I won't have empty nest syndrome. I won't experience that so I look at that like a blessing in a way too though like, I won't be an empty nester. And she will always kind of be a child at heart, right? And so now I can kind of look forward to that. I'll always have someone to kind of do stuff with, I guess, and like, I don't know, it's hard to know, but I definitely have a more positive outlook about it now than I did a few years ago. 

EMILY: Yeah, that's really nice to hear. And hopefully you can at least lean on Sebastian and Scarlett to hang out with Brooklyn while you take a nice husband-wife trip. I think you and Brooklyn are very lucky that she has two siblings to lean on. 

BAILEY: You know, I do have a friend who has a special needs daughter and she has four children. She has three boys and then her daughter's the special needs and she would really love to have one more child, preferably a daughter, because she feels like she needs a daughter that will help raise her special needs daughter. Cause she's like, well, I know the boys are there and they could be helpful, but she said, I think it's different if she had a sister to help raise her. And she's like, you know, you're so lucky that you have Scarlett because she's like, that's what I wish I had in this situation right now. And I thought about it and like, that's true. Scarlett being a twin sister probably feels a little compelled to want to take care of her one day. And so then in that case, I don't encourage everyone to go out and have more children to take care of their children, but I think about that and I think, wow, you know, when I used to be so scared of the thought of having twins, now I look at it and like, oh, I'm so thankful I had the twins and I'm so thankful they're both girls. And so I think it'll work out. 

EMILY: Yeah, our family moved from California back to the East Coast so I could live in the same town as my twin sister because she has boys that are, one of them's the same age as my Joe. So I kind of, my thinking was to put a little bit less pressure on my other son, was to have cousins around. So I'm taking advantage of the twin experience as well. And so I'm not going to be having any more children, but I am hoping that I can take advantage of the cousins. 

BAILEY: Good thinking, yeah. 

EMILY: I've really enjoyed talking to you today. Is there anything else that you want to say to this podcast audience before we go? 

BAILEY: You know, it definitely was hard in the beginning with all the health issues, the GI problems, the seizures, the first few years was so tough. And sometimes when I think about those first few years, I just cry and I just, I don't know how I survived those first few years, all the ER visits and the consultations, evaluations, therapy, procedures and CAT scans, MRIs, all of it. 

And it was so hard and I would cry every day in the car and I just didn't know how I was going to get through it. But then it got easier and Brooklyn's health issues started to go away and she started to sleep better and the seizures went away and the GI problems just went away. She outgrew a lot of these issues and things got easier. And so when I see a lot of the children, the younger children and the parents going through, they're still in the thick of it of these health issues that seem to be in the younger children, but Brooklyn is on the other side of these things and it's definitely a relief. And so when I see the parents going through this, I'm happy to tell them like, it seemed like Brooklyn grew out of these issues and it got easier. 

So even though we have other issues, it's definitely not as difficult, nearly as difficult as those first few years were. And the fear and the anxiety and just it was so hard and it got easier. So I just, I'm glad I could be there for those other parents and tell them, yeah, she outgrew those issues and now she eats well and now she sleeps better and she's not in pain and we're not at the doctors all the time and it gets better. 

EMILY: That's really good to hear. I appreciate that as well with one of the younger ones. Thank you so much for agreeing to share your story today. 

BAILEY: Oh, thank you. I'm happy to, sometimes I wish I had someone I could ask all these questions to, but I am just really thankful I could be there for the parents of the younger kids. And I know that I didn't get a lot of answers to anything really through the conference and maybe some through the Facebook, but I am happy to be there for the other parents that are coming to the Facebook group, maybe a little bit devastated and maybe with a lot of questions and just happy that I could help them because I really wish I had that when Brooklyn was younger. I had no answers and it was a really scary, confusing time. And so I'm glad I could be of help to anyone. 

EMILY: Yeah, and thank you for that because I'm one of the people that's benefiting from everything that you went through before me. 

BAILEY: That's wonderful. I'm just glad. And I'm thankful for that. I'm thankful for parents like Sherri and just being able to see Allie. And Allie's just such a rock star in everything she does. And I just love watching her and her achievements. And it also gives me a lot of hope for the future. 

PODCAST EXIT

EMILY: Thanks for listening. I hope you found today's topic helpful in your rare disease journey. If there are any other topics you want me to discuss or if you want to be a guest on the show, please reach out to me via the email included in the show description. Talk soon.