Lighting the Way: A Story of Love, Friendship, and Finding New Dreams - CERT1 w/ Samantha & Wesley Rogers

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get. Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more. Hello, welcome to the show. Once Upon A Gene, I'm your host Effie Parks. Thanks so much for taking the time to tune in to this beautiful, beautiful show being made possible by all of the wonderful stories and insights from so many of you. So thank you for joining. Lots, lots to talk about.

[00:01:26] It's the new year. Oh my gosh, I'm so excited. Happy New Year. We get a little more light every day here in Darkville, Seattle, USA, which I'm super excited about. Even though my gym is more packed than usual and we have to squeeze together in our bar class, I'm happy for everyone getting it out there and going and showing up. It always feels good when people are really putting in the effort, you know? Anyways, I'm super excited to have a new year. A couple of things of housekeeping.

[00:01:53] The Once Upon A Gene wellness retreat is right around the corner. It's on January 25th at 12 p.m. Eastern. It's three hours. It's virtual. It's free. Register at my website, effieparks.com slash events. It's going to be so awesome and a great reset. You're going to have fun and meet friends and be able to chat in the chat room. My sister, a somatic therapist, is going to open it up. Then I have Chris Ryan, my favorite trainer of all time, Epic Dad Vibes.

[00:02:21] He's going to teach us how to move our body in a 15-minute workout, especially for those of us who are lifting people for the rest of our lives. Then one of my favorite rare moms, Brittany, she's going to do a healthy cooking class for us to make sure that we as caregivers eat something darn it and eat something healthy. And we're closing it out with another mom friend, Sinead, all the way in Australia. And she's going to lead us on a nice meditation. You can lay down if you want, but many of us are going to be walking.

[00:02:49] So I hope you can come. It's going to be so fun. And I'm really excited to see you all there. Then it's Rare Disease Day soon. So I would love to know your plans. Send me messages. Send me a voicemail on my website. Text me. I want to know what you're up to. My friend Gay Grossman and I are going to plan something in San Diego. We don't know exactly what we're doing yet, but if you are near or in San Diego or feel like getting a little crazy and going there,

[00:03:18] we're going to be at the beach on the last day of February for Rare Disease Day. I hope you can come. Okay. Today. Wow. I have just a beautiful extra special couple that I'm talking to, and I think you're going to love their story. They're just incredible. And they really just show what it means to live with light and resilience and love and really finding your fire when life throws you something unexpected like rare disease.

[00:03:45] So I'm excited to help them spread their story about their daughter Lottie and the foundation they created, Lottie's Light. They're really special. We talk about friendships and new dreams and gaining a deeper capacity so you can grow from all of these challenges. And it's just a really good reminder episode. And they have a lot of wonderful thoughts that really touched me. So I'm excited to share my conversation.

[00:04:10] So I don't know where you are, if you're in their car or on a walk or in a therapy appointment or in the shower. But I'm glad you're here. And this is going to give you some serious feels. Hello, Samantha and Wesley. Welcome to the podcast. Hey, Effie. Hi, Effie. Thanks for having us. Oh, my gosh. I'm so excited to have you both on. I did not get to spend as much time with you at that Global Jeans Conference as I wished I could have. You know how everyone's flitting around. But it was so nice to meet you in person a while back.

[00:04:40] And I'm glad to have you on the show now. Thanks so much. We're really honored to be here. Yeah, your podcast has been huge for us. I've just been connecting with other people and hearing other stories. It's been really motivating and encouraging. Thank you. Thank you for saying that. That means a lot to me. That is what it's for. Well, you have the cutest little girl ever with the cutest name on the planet, Lottie. And you've started a foundation called Lottie's Light Foundation.

[00:05:07] So can you share the story behind this and what inspired you to start it and what's been your mission since its inception? So Lottie's Light Foundation was created because of a need to support SIRT1 families. SIRT1 is the gene mutation that Lottie has. And I think we can go into her diagnostic odyssey maybe a little bit later. But I think once we made it through that and started looking around to see what next,

[00:05:37] and it really was after a major hospitalization that she had three years ago, we kind of found our SIRT1 tribe, if you will, and then started seeing, you know, the words rare disease and rare disease advocacy, really learned that there's stuff that can be done today. You know, I think through your podcast, learned that the idea that your kid can have this life-altering disease

[00:06:03] and that you can, as a family, do something about it or as a community seemed, you know, before two years ago or a year and a half ago, futuristic, you know, something in a sci-fi book or, you know, a hundred years away. But I quickly learned through your podcast and other rare advocacy groups that they're already doing stuff today. And there's teams of people who are willing to help families, but the families have to come together and really drive those initiatives. And that didn't exist for SIRT1.

[00:06:32] So this last year, we put a lot of time and effort into creating Waddy's Light Foundation to be a beacon for other SIRT1 families around the world to hopefully come together, find each other, and then partner with all the players in this rare disease world to try to create treatments and a cure for our kiddos. And when Wes says we put a lot of effort into it, he did most of this. So I will take the credit for supporting him in doing all the efforts.

[00:07:02] Which is a big deal. Especially with how much stress and just back and forth there is in this entire process. It takes a lot of energy and bandwidth on both ends to make sure that you can get the job done without anyone's head bursting. For sure. Last year, you know, it was a lot of late nights kind of learning and listening to your podcast and some of the folks who've talked on here really give some great tools for how to do it.

[00:07:31] And then, you know, a lot of phone calls and emails to folks. You've been helpful. A lot of people in the community have been helpful and who to talk to at each of the steps along the way. And I think the other thing too, you know, last year, being able to do this really, we had the capacity. I mean, we were at a point that we hadn't been in several years, or at least the three prior years, we were just in a whirlwind of hurt and heartbreak

[00:07:58] and challenges for Lottie that we'd come out of. So it was really great timing that we're extremely thankful for that to learn that this was possible. And at the same time, kind of have capacity in our plates to say, we could do this. You know, I can add that to my plate and not drown our family or myself. I know so many people listening can like deeply, deeply resonate with that capacity part and so much of the time being consumed.

[00:08:26] And yes, there have been so many amazing guests on the show. We're so lucky to learn from so many people who are so generous in their time and their offering of sharing their wisdom. What are some of the most rewarding moments that the both of you have had that you've experienced through the work of the foundation? Anything come to mind from a family or some sort of interaction or anything like that? Yeah, I mean, I would say just starting this foundation, it feels like what we were striving for,

[00:08:54] even just saying it through the foundation's name of Lottie's Light. We want to be a beacon, like a lighthouse, you know, when we're all at sea and the storms of this life are just, you know, raging to say, man, I'm close to home because I can see the shore and get some stability underneath me when I get there. And so I think through that this year, having started the foundation and having just started kind of talking about it online,

[00:09:23] you know, the chatter of the internet brings the world together. And we have had three new families reach out to us just in 2024 that have been diagnosed. It was a boy and two little girls. And that has been so rewarding to see the work in real life. This is Lottie's Light, that she is a Light, but it is for everybody, every person in this Sertra or Sert1 community. So that has been really rewarding connecting with them.

[00:09:52] And they are just starting this. They are where we were five years ago when we had a three-year-old diagnosed with this rare disease that had no treatment, no cure. And now we're saying, we still don't have all the answers, but you're not alone because we didn't have a community to reach out. We had no person to speak to who had lived our experience. So just being able to FaceTime with them, I mean, I'm texting with some of them throughout, you know, the months and reaching out and saying, have you tried this med?

[00:10:22] What about this diet? What are we doing now? What should we do next? And kind of proactively try to serve these families has been really rewarding for us. Yeah, I joke that we're a really needy family in all of our relationships. So it is wonderful when you get to be on the giving end of relationships. And so, you know, I think one of the rewards is being able to do that, to be able to be the fun of friend when other families have questions at their stage in this journey.

[00:10:51] But also I think something that's been really fun in this is connecting with other rare disease advocates and parents and being able to celebrate with them and their wins and their progress. And I think even, you know, after we have met you once in person, but we feel like you're a friend of ours and seeing, I think you're opposed to Ford, you know, that victory that he got recently in therapy. And just getting to see that across the community, be able to relate and connect.

[00:11:21] You feel like these are close friends because you all share a journey. And so we love that, you know, having more opportunities to celebrate with other people. Oh my gosh, me too. Yeah, there's just, there's, you can't even really put it into words what it means like to connect with another family like ours without any context or backstory, right? Like there's just a knowing and sort of a gravity to the people that are in this world, right? Yeah. And I love what you said about how you're a needy family.

[00:11:51] Because I'm like, yeah, I'm a taker. I'm taking, taking. Yeah. And then when you realize like the enormity of just like glowing goodness of being able to community service, right? Be able to give back. It is the best fuel and the best feeling. And yes. And it's for everyone, right? It's for everyone. It's not just for you. It's for them. And it is such a cool thing to be able to offer and then just watch the ball continue to just grow and grow and grow. Well, I want to hear a little about Lottie

[00:12:20] and her light and, you know, her personality and her strength. Let's hear a little bit about her. Lottie's amazing. She is so fun and beautiful. She monopolizes my mind and my thoughts. We have four children. She is our second of four. She has a big brother who's 11. Lottie is eight. And then she has a little sister who's six and a three-year-old baby brother. So they're a fun, a bunch, a rowdy bunch.

[00:12:48] But she, you know, she kind of drives the ship in many ways. You know, as far as what we can do, what we can't do, our adventures. You know, she's, she calls a lot of the shots. We love her. I think she's our first daughter. So you have all those, you know, fun, sweet thoughts and dreams around her life and what that's going to look like. But it's been drastically different, you know, than what we initially dreamed. And so it's been a life of dreaming new dreams

[00:13:17] and watching her achieve, you know, these, I think they'll call them inchstones or just these little wins in her life. And she works so hard at everything in life. With SIRT1, it's a neurodevelopmental gene mutation. So a lot of the similar things you see in other mutations like that, developmental delay, GI issues, sleep issues, seizures and epilepsy, high pain tolerance. And it's kind of, let's continue. But it requires, you know,

[00:13:46] a lot of work for her to do little things. And it's just exciting to see her enjoy things. Sometimes that's hard to work for, but she loves to jump on a trampoline. She loves to kind of teeter and feel those sensations of being on the edge of the couch or the edge of something. And she loves to hold our hands when we're sitting down and swing your head back and then pull her head forward. And yeah, loves a good tickle occasionally. And a nice big side hug from time to time. But it's, you know, on her limits.

[00:14:15] You try to come in for a hug. She'll push you away. She'll tell you. Yeah, totally. Yeah, she's going to tell you. We're in the same way. Well, especially with Wes, with your beard, she really doesn't like those hugs from you. That's right. Those are pokey. I don't blame her. Yes. When she was little, she would just, you know, cuddle up into my arms and play with my beard. But as she gets older, she's less than us. She's averse. Oh my gosh, she's so cute. And she sounds so familiar.

[00:14:46] Yeah. You know, you mentioned a little earlier about capacity and how both of you sort of found that you had some capacity. How do you really define that for someone? And what would you say to them who feels like they've reached their limit? Or maybe they're coming up for air. Yeah, we, I think capacity would be, here's how I read it for our family, I will say. We had capacity when we wanted to do something more.

[00:15:14] So I think it's a really easy litmus test when you're saying, I can't, all I'm doing is keeping my head above water. Sometimes, sometimes I'm below the surface. But when you keep your head above water long enough and then you start thinking, I think I could swim to like, you know, that little buoy over there. I'll just swim there. And I think it's like when you want to, when you feel that desire, honestly, to say, I think I can actually take this new mom. I'll just double our dinner.

[00:15:44] I'll just take her a meal, you know. So I think just finding those little places that you can say yes to and you want to say yes to. Because when life really hits hard with these children who need so much more than their siblings, their neurotypical peers, you really can't. A lot of the things just sound like way too much. I mean, sometimes getting out of bed sounds like it's too much. I don't want to.

[00:16:11] So I would say defining capacity for us has been, I want to, and then looking at your life and saying, here's where I can. And it's like in really small, small ways. And that, you know, started with like signing up our 11 year old for soccer and saying, here's where I can. We can do one practice out of the two or three that the coach wants us to be there. We can do one and he can do soccer. So I don't know, Les, if you have anything to add to that. You know, we're comfortable with saying no.

[00:16:40] As much as we want to say yes to a lot of things, we know how important it is to guard those yeses. And so I think when you start noticing that your propensity to say yes without that kind of fear that's attached to it or overwhelming, like did I just commit to that? I think that's a good MS test. Perhaps that you've got some capacity mentally, emotionally, you know, and obviously your family's schedule and time to do a little bit more.

[00:17:10] And it's not just, you know, I think the foundation is one element, right? To start a foundation or to jump in and use your giftings and talents for a foundation that exists for your greatest ease. But I think also in all the other areas and relationships in your life. You know, to like Samantha mentioned, to take a meal to a friend or to commit to a new activity for your kids or for your marriage or for your extended family and those things.

[00:17:38] You both work well as a team. It sounds like your personalities play off of each other nicely, especially in crisis. And Samantha, I love what you said about taking it in small bites, right? It doesn't have to be this big, grand sort of awakening. Right. We certainly didn't start with foundation. Like we weren't like, let's start a foundation. Like we had to build that capacity and say, okay, we have to like measure

[00:18:06] what can we really take in for sure. Yeah. And then when you do that, you can't unsee the progress, right? Like even if you are still taking it at the pace that you can sort of live with and be happy and still have energy, you still can't unsee how far you've come and how far you could still go, which is very motivating. Yeah, you're right. So bringing dinners to friends and making a point to sort of keep relationships going.

[00:18:36] How are friendships for the two of you? Like what advice do you have for families seeking meaningful connections in our rare community and beyond? Like even just the friends next door, like what advice do you have to sort of keep those friends? Because I know it is very difficult if they aren't walking the same lifestyle, if all the cards aren't completely aligned. Sometimes it's really easy to have those people fall by the wayside. So what are you doing? Yeah, I think, you know, for, yeah, we had a bit of exercise

[00:19:06] early in our marriage and in building our family, we moved to Dubai like in our early 20s. We had a two-year-old. We were both working in healthcare, wanted to work in global nonprofits. And so we, this opportunity came up to move outside of Dubai and Samantha got to work in labor and delivery and building out birthing education for a hospital there. I was managing an eye clinic and it's a unique part of the world because we grew up in a big city, Houston, which is very diverse,

[00:19:35] but it's different in Dubai. You know what I mean? It feels like a portal to so many different worlds because the cultures are so rich and so different. There's more that you see the differences than maybe all of the things we have in common. And so it really forced you to go outside of your comfort zone and making friends and finding unique ways involved with, you know, the folks you work with or in your community and finding shared interests and finding ways to serve and friends

[00:20:05] and the folks you're meeting. So that was a cool opportunity to practice that. We moved back. Lottie was born there. We moved back because we weren't able to figure out what was going on early in her development and why she wasn't hitting all those milestones. By coming back, you know, we came back with a significant amount of need. You know, we were broken. We were scared. What's going on with Lottie? Do we need to be in Texas? You know, should we be like moving to some big city on the East Coast or West Coast

[00:20:34] to find care? But really found that obviously getting her the right care was a huge goal, but we slowly saw how valuable the friendships and the community that was growing around us was for our success to thrive. And at the same time, I'll say, you know, that was a really this first year or so really dark and scary and getting our diagnosis and really grieving that. It's very easy to kind of cocoon in, at least for me and I think our household

[00:21:04] would just be us, you know, the Rogers crew and kind of really focus in. But we had so many people pouring into us and really saw how valuable that was and how important it is to be open about your needs and how broken we were, how sad we were, how, you know, like hard things were. And I think we talked about being the needy friends that we were. There was very little we could do to give back to everybody. But I think

[00:21:33] being willing to be vulnerable with how hard it was to our friends and to ask so much of friends and they were willing. You know, I think helping them understand what our needs are, how they could care for us as friends. They didn't understand what Lottie's life was like or what it's like to, you know, stay up all night with your kid over and over and over again or being terrified of another seizure or how that impacts your marriage and your kids.

[00:22:03] but our friends are willing to listen. So we, you know, the last six years now being back in Texas have worked really hard to maintain those friendships, grow new friendships and it's been a great opportunity I think to help people see the world of rare diseases and see Lottie's world and kids like her what their world's like. Any thoughts from you, Samantha? Yeah, I think like Wes said, just we received so much in friendship

[00:22:31] and we need so much regularly. So part of advocating for Charlotte is just bringing people into our world and showing them. Even this morning we were invited down the street to a new family that we know from church and school. We have some connections with them and I just told her, I mean, they are aware of Lottie. We see them around the community but she is legally blind. I'm not sure how she's going to manage once we get there.

[00:23:00] If she's not doing well, we'll just go back home no problem and just letting them know some of these needs and saying, but we still want to come to your house even though that's a place that's unfamiliar for a blind child. I will be walking around with her the entire time. If you're good with that, I'm good with that. You know, and of course, she was, you know, the mom, the host was very gracious and we went over and it was a great time for all of my kids to be able to connect with her family and I hope to have them over and we also have, most of the time, a lot of friends will come to our house

[00:23:30] because they know that's easier for Charlotte to play and it's safer for her to be here. She's got her trampoline. She has more fun typically within her own environment, but telling people that honestly, you know, it's not always easy to have a friend who says, yeah, most of the time I'm going to have to come to you, but we have friends who are willing to do that because they don't just love me or Lincoln, you know, our oldest son. They love our whole family and they show that

[00:24:00] by their willingness to be flexible for us and when we are able to, we are as much as we can be, as much as Lottie can be, flexible as well. So we just really have grown so much from friendships and we just have seen their value grow and realize that they are worth fighting for even when it makes it a little awkward or we need to ask more, you know, for Lottie's diet or playtime.

[00:24:28] It has been so worth it to maintain and pour into those friendships. Oh my gosh, I'm so happy for you and I wouldn't like to generalize it and say it's rare to have friendships like that, but it is a little, it's extra special if anything and I really like the point about communication, whether it's, hey, this is what it actually looks like if I bring my child over and, you know, everything is going to really be super comfortable if you can make it to us

[00:24:57] even though it could potentially be a burden doing it over and over and over for other people but the ones who show up in that way are, oh my gosh, like the relaxing vibe that you can have when you're around those people who make the effort to just show up in all of those ways is like life-altering. Yeah, and it's not always successful events, you know, I think, for example, like one of the things that Lottie has struggled with in the past is rumination and so, you know,

[00:25:27] and that's, you know, spitting up a lot constantly and so, you know, going to friends' houses or going to events that was part of it that we just had to accept that. And I had to communicate about that. If we come to your house, are you okay with throw up on your floor? Like, are you okay with it? Because if you're not, I need to know now. Yep. We will do our best to help and clean it up but it's likely coming. It's going to happen. Oh my gosh, yeah. I have so many experiences of just running forward to the hard floor

[00:25:57] in someone else's house when I was little, right? Because I'm like, it's going to happen. I'm going to really hope it happens on the hard floor. But if not, but it might splash. Are you okay with that? Get me in the splash zone. It's for real though. It's for real. It really is. Loud screaming, you know, too, that may come with it. We just went out to eat the other day just this weekend. So, Saturday. We went out to visit some friends and on our way back

[00:26:26] Samantha wanted to go to this restaurant that she really loves and she's been to with some friends. So, we go as a family and I'm pretty sure there's a couple, like two tables over that are having a romantic or planning to have a romantic dinner and here we are just bringing this army of kids. You know, Lottie's, luckily she wasn't singing too loud or screaming while singing. We call it singing. Too loud, but there were a few times she was giving them a solo and I thought,

[00:26:55] I hope they're loving this for their day. But, you know, we still push ourselves in that regard to get out because it's not always awesome, you know, to be in the middle of a restaurant and, you know, know that we're practically breaking everything or making a big commotion. But, I think out in public and with our friends we just keep pushing ourselves and I know it's good for us. It's great for Lottie and her siblings and like Samantha said in advocating for Lottie, I think it's so good for our community

[00:27:25] to see families like ours, kids like Lottie out and about in real life. Yeah. And to say, her screaming is normal. It is your new normal. We also have the scream. I bet that couple was like making a video about you guys like they do on airplanes, you know, and they're like, can you believe these people and all these children? I mean, it wasn't just her, honestly, like three-fourths of the kids were screaming so it was a good time. Man,

[00:27:54] I aspire to be able to go to a restaurant someday. Good on you guys and again, so good for the other kids too, right? To have a little bit of normalcy and exposure even for them because I know how stuck we are and I know how much we are home compared to other people and it can get very old and very frustrating. Yeah. If y'all ever in the Austin area or we're up there, we'll take y'all out and show you how to start a commotion. It's good fun. Okay, I'm sure Lottie and Ford could definitely

[00:28:24] take care of that. That's right. We could just eat and forget about it. That's gonna be great. Okay, I want to talk about dreams, Wesley. You mentioned dreams the other day in our messaging back and forth. They can be a challenging and a powerful process so how have the two of you sort of embraced that idea to redefine what your dreams are or big dreams after Lottie's diagnosis. Well, as Wes mentioned, we were living outside of Dubai and that really had been the dream, right?

[00:28:53] Like we were here doing it and if ever there had been a time in my life where I wasn't sure what I should be doing or where I should be, that's when we really felt that strong confidence. Like, this is it, you know? So it really felt like this huge rug had been torn out from under us when we start seeing obvious developmental delay with Charlotte and not having any answers

[00:29:21] for the two years, two to three years before we got a diagnosis. It was terrifying. And so that dream of just what we had made of our lives really did have to die and I hate that word. It's just, it's so powerful but knowing that truly when something, like a flower bed, you know, like when you add the soil, the top soil, those are things that are decomposing and it brings life to the soil

[00:29:51] beneath it and realizing once that dream of not only our shared life but the life that we hoped our daughter would have of a neurotypical child, healthy, strong, you know, able, able to run and play. We were able to just step back of course, you know, going through all that grief and realize like there are new dreams to be had here.

[00:30:20] All is not lost because our dreams, our original dreams were not completely realized. There is so much to gain in new dreams and it really has been a beautiful, painful process of so many tears shed. I mean, because it's not just like I said our dreams for our life, it's even counting those costs for her older brother and her two younger siblings. Rosemary, the other day,

[00:30:50] two days ago, she said, Mommy, I really wish that I could play with my sister because the boys get to wrestle and they really like playing soccer but I don't like doing those things. I want to play dress up and I wish that Lottie could play that with me and as heartbreaking as that is, I just held her and I cried and after I held her and told her, I wish that Lottie could play with you as well

[00:31:20] but it doesn't mean that she can't do what you're doing now together. Y'all are in the bathtub together and you're having a bubble bath and you can get on a trampoline with her. You can take her by the hand and walk on, we have a little balance beam on the floor, walk on the balance beam with her. Just dreaming those new dreams for us and our children, it takes effort, it takes struggle and pain and tears but it's so rewarding when you can look to the future

[00:31:50] and think of all that can be done whether it's through foundation or just in our family and showing her siblings the value and worth that comes with Charlotte in her life. Yeah, I think with dreams often times there's like some we hold so like tightly or have in the past and felt like they were like our sure future plan like the must happen things and I mentioned working in Dubai we both wanted to work in global non-profit healthcare

[00:32:20] and we had this really cool long-term plan and here we are in Texas now six years later and just completely different than how we had ridden out our future in those dreams but you know I think looking here now like I love where we are even though there are many hard bits and I think Samantha mentioned earlier like it felt like when we were there like we felt like we were right where we needed

[00:32:49] to be there was just like kind of contentment that we had being there and I'll say you know Central Texas not feeling it I love Central Texas I love being from Texas all my Texans don't hear me hating but it's just not necessarily the same there that said you know we're dreaming new dreams you know what does it look like to find more families with certain one how can we serve more families and be a connector of them

[00:33:19] to doctors who could and parents who can answer the questions they've been eager to know and understand and help them solve family problems for the kids and in the house that others have already walked through and then together how can we create therapies and a cure for our kids something that seemed impossible but that's a reality and so just dreaming new dreams for that but I think even for our family and what it looks like to live here and you know

[00:33:49] serve our neighbors and be a friendly neighbor and friends to people we make and really just have a lot of fun you know with our kids and our marriage here I think you know kind of you're a little more light-hearted back to like when I was in high school and probably for like I don't know six eight years of my teen childhood life I was adamant or sure of it that I was going to drive one day you know a lowered pickup truck you know dually with flames going

[00:34:19] down the side and just really cool low rider and big wheels and all that stuff and I you know had I had any money as a teenager I would have had all my money on it that that was where I'd be you know in my mid-30s and here I am nowhere close to that I'm driving a minivan or a super van as I call it and so while you know those dreams were real and super important to me in that part of my life I'm so happy

[00:34:48] with the minivan and because my dreams and my goals and my priorities have shifted my life and just loving it you know so making the most out of my super cool super van I hear that man you both just made me have so many memories and thoughts thanks for that reflection of everything I really appreciate it you're such beautiful human beings Lottie's a really lucky little kiddo yeah we're lucky so what's the one thing that you wish

[00:35:17] every rare parent who's navigating a new diagnosis could hear or take to heart I think fighting for those friendships around you you know we talked about capacity but keeping an eye on when you have that to grow friendships to serve others to just look for those little bits where you can stretch yourself in a good way obviously I mean you know some folks listening may be in that really hard season where they're just trying to survive but you know very soon there's going to be a day they wake up

[00:35:46] and say hey like I could do one more thing that would be really encouraging or life giving for myself or for our marriage or for our kid let's go do that it's not going to be easy let's go do that and then yeah dream new dreams there's so much ahead of us in the rare disease community so many friendships to be made there and within your own rare disease community but then also in your community around you that don't know what it's like yeah

[00:36:16] dream new dreams for them on how your community around you can grow and loving and really valuing these these really beautiful children who need them who need us and we need them I would say for the parent going through diagnosis and receiving that news that quote this too shall pass that the darkness of night that the sun will dawn and you probably won't even notice the sunrise

[00:36:46] but one day like Wes said you're gonna wake up and be like it's different it's different than it was and you lived through it and we're here on the other side and you just keep plotting you know put one foot in front of the other and learn to sing in the dark amen is there anything else that I haven't asked the two of you that you want to share before we close no I don't think so well thank you so much for being my guest I loved hearing your wisdom

[00:37:15] and I am going to think about it all day I think so thanks for giving me that little zhuzh for the new year too it feels good and I'm always so proud of families who get to the point that you're at and who you know have an onward mindset so thank you for being my guest yeah Effie thank you so much for making this a place for people to come and chat and hear stories it's been so encouraging to us I've had a lot of late nights working being inspired and a lot of big

[00:37:44] rare dad tears doing some of these cool stories and sad stories but it's been it's been a blessing to us for sure so thank you thank you it's my ultimate pleasure thank you so much I hope you've been enjoying this podcast if you like what you hear please share this show with your people and please make sure to rate and review it on iTunes or wherever you get your podcasts you can also head over to Instagram Facebook and Twitter to connect with me and stay updated on the show

[00:38:15] if you're interested in sharing your story or if you have anything you would like to contribute please submit it to my website at effieparks.com thank you so much for listening to the show and for supporting me along the way I appreciate y'all so much I don't know what kind of day you're having but if you need a little pick-me-up Ford's got you you're having you're having you're having you