Couple Things with Shawn and Andrew - 157 | a one in a million family with the willardsons

Episode Date: April 12, 2023

In today’s episode, we got to talk to our friends Shannon and Chase Willardson! You'll get to know them as a family and couple including how they met, their daughter's rare disease called Congenital disorders of Glycosylation (CDG) as well as a little of their IVF journey. We are also super excited that they just recently launched their podcast, "Don't Judge, Just Love!", which we'll link below!! We hope you enjoy it! This episode is sponsored by AG1! ▶ If you want to take ownership of your health, try AG1 and get a FREE 1-year supply of Vitamin D AND 5 Free AG1 Travel Packs with your first purchase. Go to https://www.drinkAG1.com/COUPLETHINGS. Check it out! Check out their socials and podcast below! Instagram ▶ https://www.instagram.com/shannonwillardson/ YouTube ▶ https://www.youtube.com/@WillardsonFamily Podcast ▶ https://www.youtube.com/@familymade Love you guys! Shawn and Andrew Follow My Instagram ▶ https://www.instagram.com/ShawnJohnson Follow My Tik Tok ▶ https://www.tiktok.com/@shawnjohnson Like the Facebook page! ▶ https://www.facebook.com/ShawnJohnson Follow Andrew’s Instagram ▶ httsp://www.instagram.com/AndrewDEast Andrew’s Tik Tok ▶ https://www.tiktok.com/@andrewdeast?lang=en Like the Facebook page! ▶ https://www.facebook.com/AndrewDEast Learn more about your ad choices. Visit megaphone.fm/adchoices

What's up, everybody. Welcome back to a couple things with Sean and Andrew. A podcast all about couples. And the things they go through. These next guests of ours are good friends, Shannon and Chase Willardson, who just became part of the Family Made Network. That's right. Can you believe we've only met them once in person? No. I think we know them. They are our friends. Yes. I feel like I know everything about them.

We vibe. We do. And we hope you listening will like them as well. This conversation was really fun. Exciting times for the Willardson family. They have three kids Yes Working on a four

Yes But their story is nothing short of incredible Their perspective is absolutely inspirational I think And we're just glad to know them We're glad that they have started Their own show called Don't Judge Just Love You can find information on that down below

But they're going to unpack What their story is And how they've navigated through it In so many different ways But these two are really really special Chase and I I don't know if you know this We'll send like motivational quotes back and back and forth to each other videos or like books.

That doesn't surprise me. You guys are bros. Yeah. When you first, they actually came out here and visited us. And as soon as I saw you and Chase together, I was like, you guys are almost the same human. Also, his laugh. Yeah. I mean, phenomenal.

How can you not feel joy when you hear his laugh? A little man crush. I guess I do. Can we just play their trailer though for their show right here? Hi, I'm Shannon. And I'm Chase. And this is Don't Judge Just Love, the podcast, where we talk about all the things with no judgment. Only love.

That's right. We have a podcast now, dudes, and we are so pumped about it. We cannot wait to connect with y'all in this way and dive deep into topics that we care about and that you care about. But before we jump in, we thought we'd do a little intro, a little intro, take it away, Chase. So Shannon and I have been married for 12 years. Best 12 years of Chase's life. Which is very true. Don't get it wrong.

We have three kids. So we have Jack who's eight, Charlotte, who we call Charlie, who's six, and Ava, who is four. Good job. Remembering the kids' ages. Huge achievement. No, it's not. We know our kids' ages and names. Big things happening already.

I think we all know what it feels like to be judged, right? To be misjudged, to be misunderstood, to feel criticized. to feel criticized. And it sucks. Nobody likes. Nobody likes to feel that. And I think the reality is that life is hard. You know, we're all going through our own version of hard, hard things.

And the last thing any of us need is to have other people's judgment heaped on top of that. I agree. And but as much as life is hard, it's also beautiful. and beautiful things can come out of the heart. Absolutely. We've experienced that personally in our lives and creating, after creating content for, what, over 10 years now? 10 plus years. It's been a hot minute.

I think the thing that I have seen the most need for is more grace, more kindness, more unity, more support of each other in the things that make life hard. ultimately less judgment more love and that's why we wanted to create this podcast so that we could put that out into the world and discuss all the things but with no judgment so that was the impetus for us creating this podcast don't judge just love every week we'll ask you to come as you are bring your most authentic self and join us in this judgment free zone where we'll get vulnerable and we're going to be real and we're also going to discuss all the things, because the truth is, life is hard, but life is also beautiful. So Shannon, where can we find this podcast?

Thanks for asking, Chase. I'd love to tell our listeners that. Y'all, you can tune in by subscribing to the Family Made Network and listen to us on Apple, Spotify, or wherever you listen to your podcasts. If you want to watch the podcast, you can do that as well by subscribing to the Family Made YouTube page. and we would also love for you to connect with us directly through our social media channels. We are at Shannon Willardson on Instagram and TikTok at Shannon Willardson on Instagram and TikTok

and then Willardson Family on YouTube. And we really hope you'll do that. We would love your feedback on the podcast. We'd love your ideas about future episodes. Easiest way to do that is probably through DM on Instagram. So make sure you're following there. But we would love to hear your thoughts and ideas about what we can cover in future episodes. all the things. We're just so pumped you're here, and we're so excited to be doing this.

So we hope that this can be a space where you feel seen and also safe. For sure, where you feel like you can come as you are, have fun with us, laugh with us, get real with us, get vulnerable with us, talk through life's hard, through life's beautiful, and everything in between, and most importantly, with no judgment, only love. That's right. All that here at the Don't Judge, Love Podcasts. Don't judge this love, y'all. We'll see you soon.

So there you go. And if you like it, you can listen to all of their episodes with the link down below. Anyway, Chase, Shannon, thank you so much for joining us. We are glad to know you and we hope you enjoy this one. Let's go ahead and roll into it. Chase, Shannon, good to see you again. Thank you for taking time to redo this interview. It's good to see your faces.

Likewise. We're so happy to be here. Round two, baby. We're just pumped to be here again. Yeah. I said, hopefully this one will be easier because, like, now I feel like I know you. Exactly. And when we first start doing interviews with people, it's always like that icebreaker phase.

Now I'm like, oh, we're good. We can just jump right into it. Pretty much best. So here we go. Yes. Yes. So let's start at the beginning. How did you two meet?

I love of first sight. Shannon Sopi just wanted to propose right there. Okay. Okay. No, we had a mutual friend. And he did actually introduce me, or introduced her, saying, this girl is awesome. I think you should marry her. And I was like, okay, you know, let's slow down here for a second.

I was like, why aren't you dating her? She's so amazing. And at the time, he's dating the person that he married and had, has four kids with. And so I was like, okay, so you're dating this other girl that you're going to marry. So fantastic. So we tried to go on a couple different blind dates. But one time, Missing each other.

Shandon, couldn't go. I couldn't go the next time. Yeah. And then. Anyway, long story long. We met at college. We kept like missing each other. Finally, the stars aligned.

We randomly ran into each other in a computer lab. Chase got the cahonas to ask me out. No, no, no. So you have to rewind there for a second, though, because so I, so at the college we were going to, they have a place that's called the testing center where you take like 90% of your test. So it's like a super stressful building. It's like one of the worst places on campus. And so I was walking to like, and I was retaking in a class. Did fantastic in the retake, by the way. But I was walking and I saw Shannon and I was like, oh my gosh, I recognize her from somewhere because I had Facebook's doctor. And I couldn't like put the two together for a second. I was like, oh my gosh, you're, we were supposed to go into blind date together. And then Shannon was like, yeah. And I was so stressed. that I was just like, well, see you later.

And then I just walked away like an idiot. And then to the next time... And I'm like, all right, if the dude doesn't ask you out in that moment, like, he's not interested. Like, perfect setup. Yeah. And it's just like, well, see you later. So then the computer lab.

Yeah, we were supposed to go on a date, right? Oh, yeah. Never mind. We're good. But have a good day. Yeah, it's almost like you saw her in person. Yeah. So in the computer lab, I did have a phrase that she thought that I like, it was like a...

Total line. Yeah, but no, so we had some small talk because I'd walked out of doing a project with this. It was a group project and there was this girl that was standing next to me and I wanted her to leave. So I was kind of like, and she just didn't get the social cues. And so she just stood there and I was like, I can't ask Shannon out in front of this other girl. Anyway, so I walked away and then I walked back after we'd had small talk and I was like, look, I never do this, which I don't. And I said, are you dating anyone? She's like, no.

And I was like, would you let me take you out? It's like, yeah. It's like, okay. Wham bam. Wow. Way and bam, just like that, done deal. And then how long after dating did you propose? Gosh, a really long time.

No, I think it was like a couple months. It was a month and a half before I proposed. So a month and a half before proposed and then we got married. It was five months. So from our first date to our wedding day, five months. Did you feel like that was, that felt natural? I mean, I hope none of my children try to pull, it's not like that. What was the urgency for you guys?

I think like it wasn't so much that we, it wasn't necessarily an urgency more than I would describe it as like, we had both dated a lot of people that by that point and. You dated a lot of people? Just, no. Surprise. All of this is coming out now. No, and it was totally one of those, like, I mean, to be cliche, when you know, you know, in a situation. It's like, it just felt so clearly different with Chase very early on. And so things just, you know, progressed really quickly.

How did it feel different with Chase? Like everything. I mean, for one, he was the type of person that I knew. I really wanted to be with, you know, his kind, his temperament, his values, and he kind of checked all these boxes, so to speak, of the type of person that I wanted to marry. But then also, and I don't know, this might be hard for me to describe, but with Chase, I felt like there was this undercurrent of like, the only word that comes to mind was peace. Like, there's just this undercurrent of peace as we rotating like it just felt good and it felt different and even though you know the the idea of

getting married like that's such a huge decision so I think it's really normal to feel really nervous about it um but even though in those moments where I was like oh like underneath all of that it's just it was still that piece it wasn't unsettling just felt good wow well said Shannon thank you I was going to say I had a conversation with someone the other day who described it as a similar situation, like had dated people before and met their husband and said, my soul felt safe for the first time. Like there was like, not in a dramatic way, but it was just like, like you said, at peace. There's just this. Yeah. And Chase, since you had apparently, you know, been dating so many people. What was it like when you met Shannon? So.

How funny, what was that one? It was amazing. No, I actually, I think it's important to be able to contrast. So, again, we kind of joke about dating a lot of people, but I do think it's important that you date, you know, different types of people. And at the time when we first started dating, we both were taking, we were going out with different people. But then I very quickly realized, you know, after three dates, because I, you know, I've

gone on three dates with Shannon and then with this other girl. And she was a very nice girl, the other girl. but I was like, while I was with her, I was thinking about Shannon. And so I was like, okay. So I don't want to take out anybody else. You know, it's like you can see yourself, you know, marrying a lot of different types of people, but she's the type of person that I didn't want to live life without, you know?

Oh, geez. Wow. Okay. Romantic wisdom. I actually love that because we always talk about the, one, the cliche one, and how we don't necessarily believe in it. Because I think with marriage, you can marry a ton of different people and make it work. Totally.

But I do believe, like you said, that there's going to be one person where you're like, I, I want to make this work. This is the person I, I could see myself with. So I like that. That's kind of how we get it too. Like my philosophy was always like almost like a good, better best in principle. Like, you know, there's probably, like you said, Sean, a lot of people you can make it work with but there's got to be people that it would go better with and then kind of like people it

would be best with and i'll be honest i used to when i was in the dating phase of my life i would pray and tell god like please align my path with one of my best matches like someone who would in that best category um because yeah that's that's what i want that's what i got I love. I love it. Okay, so describe the first, describe the pre-kids phase of your marriage. What was that like with you guys? And how long was that? Yeah, so we waited a little longer to have kids.

So once we got married, very quickly, we knew like, all right, let's just, you know, let's just enjoy being married now for a while before we kids. So we waited three years before we started trying to get pregnant. And I don't know, the word that comes to mind when I think of how to describe it was just fun. It was a fun time. We were finishing college. We were both working and kind of broke, but it didn't really matter, you know. We were just figuring it all out and getting to know each other better and figuring the marriage thing out.

And it was just fun. Would you agree to you? She's like, I don't know about that. No, no, it was a lot of fun. And because our, you know, pre-marriage period of time was so short, I think that we wanted to have that time to really just get to know each other because once you have kids, it's like your focus is taken, you know, to the kids as well. And so we wanted to make sure that we were, you know, creating a marriage and a relationship that had a great foundation, you know, before having kids. But again, I think I was like, I think right after we got married, I was like, let's have kids right away. And I think Shannon, you know, we obviously wanted to have kids, but I think we realized, okay, let's, let's get to know each other a little bit.

We were married like, so, are you ready? Oh, my gosh. Slow down there, Tiger. Yeah, you said Shannon phrased it that they waited quite a while or like quite some time. Yeah. Three years, I don't feel like, at least in like our region is not, that's... We're around people who wait 10, 15, 20 years. Yeah.

It's interesting how there's like stimulus. Similar to you. So three years. Which I feel like it was quick. Yeah, I feel like it was quick. But I do think to, like you said, there's something really special to after you get married. You should have that time for just you to. For sure.

Because kids can like put a wedge. in your marriage very easily because like you said it's it you don't get to focus so much on your spouse anymore so you better build a really strong foundation so that when kids come that little that little wedge um yeah that little person um makes your marriage stronger so I think three years is like fast yeah yeah like minimum three years minimum no it's true because it just totally changes the dynamic you know and so to make sure that you know you And to your point about having a strong foundation, yeah. We were no regrets about doing that for sure.

Yeah. So you guys have three kids now. So now we have three kids. Yeah. Give us their names and ages. Yeah. So Jack is eight. Just turned eight.

Two weeks ago. Charlotte, we call her Charlie, is six. She's six. That's crazy. And then Ava is three. Oh. So three years after you get married, you try. You guys decide that, like, it's time.

And did you get pregnant? This is probably a personal question. Did you get pregnant? Easy. Is that the right word? Yeah. With Jack? Yeah, that's a good ask.

Yeah. Yes, we did. So it all happened. And honestly, with all three pregnancies, it was, it was quick. It was pretty quick. Um, Ava actually was a surprise pregnancy while on contraceptives, if I'm allowed to be that honest. So, um, wow. Thanks, Gary.

Yeah. Yeah. Um, but yeah, so all of our pregnancies were, you know, pretty quick and pretty easy, for lack of a better word. So describe to us the transition of pre-kids marriage to post-Jack marriage. how did how did baby one go for you guys as far as the dynamic within your relationship and then just being new parents I think it was exciting I mean I think there's that like I can't think of the right word either but like almost like the honeymoon face of having a child like where you're excited to get up and then you're not getting enough sleep which you know depending on how your kids sleeps but but no I think we were really excited and we so for my side the family. It was the first grandkid. So it was really cool. My parents, to see them as grandparents. And we lived really close to them. And so we did a lot of fun things with them and created some

great, you know, great memories with Jack. And I thought it was fun. But to keep it real, it was also, you know, I think there's a lot to navigate with just coming together on how, what your dynamic is going to be as parents, you know, where you're both parenting, I think we had a lot of growth in, like, learning to be unselfish and, you know, kind of like, we're tag teaming this. We're not taking tabs on who's doing what. Like, we're just tackling this together at all times, you know? So hard.

Yeah. And kids, like, they will, man, they'll teach you how to do that like nothing else will. Nothing will make you force you to be unselfish, like having kids will. yeah and so you know we had a lot of growth there um you know and then just candidly i feel like as a mom going through that whole um like the newborn phase and the postpartum phase that was a whole thing for me at least too hopefully chase didn't notice it that much but i remember feeling like it took a while to feel like i was back to what was feeling like my stuff again you know and so being able to function in my marriage and also as a mom while dealing with all that

hormonal chunk that's just like a part of having babies like that was a new thing to navigate too so I also think just like from a scheduling standpoint like you know we go like spontaneity was was something that we'd enjoy like oh let's go and see a moogger let's go to this restaurant let's go and do this or that and it's just all of a sudden you're like okay well interrupt his math or like so all of a sudden you're like oh okay like or like are the grandparents available to watch the baby right now you know or like so there's just a lot of things that you start to realize like you start to be even hopefully you try to be a little bit more selfless you know even with your time yeah exactly we did that tour at the end of january and there's a couple that came

up to us and we did this episode on like our yearly goals and kind of like miles still we're trying to hit and things and events we're trying to do and it's like pretty structured out there's a lot on there and we're pretty like rigid as far as keeping track of it and they came up to us like we love that mentality of like really being dialed in and focused but but do you feel like you lose the spontaneity part of life and I had to take a step back and just almost chuckled to myself where it's like with two kids there's not you're on a routine dude you're dialed in literally, like, I can tell you. We lost that a long time.

Yeah. Yeah, we just embraced it. Yeah. But it's fun because I was thinking the other day about how lucky I feel to have been married before having kids because I feel like there is kind of this preparation that you go through talking about the selfishness and the perspective that, oh, it's not all about me. Because with marriage, you get a taste of that. And like with the scheduling, it's now not just Andrew, you know, packing a bag and flying across the country whenever he wants to.

it's oh i got to talk to my wife and figure the logistics out and then with a kid it's like boom even more so so i feel like it's like that you know the you can't just up and leave now yeah yeah yeah yeah anyway yeah 100% describe each of your kids uh in one word oh my gosh oh my gosh loaded question Pick one word for Jack. That is challenging. I feel like games. Like he loves, like, sports, and he wants everything to kind of be a game.

Love that. I don't think you agree with that. That word, though. Do you have a better one? Oh, God. Everything. That's what's coming to my mind with Jack. He's just, like, he's just all the things.

He's got so, um, he's got so much personality. and it just comes out in some ways. That's awesome. Charlie, it's a good word for Char Char Char. Char. Yeah. Bouncy.

Love it. Sunshine. I thought of sunshine. Happiness. Charlie is just like always that little rare sunshine, just always up. Wow. And little Ava. I think.

of nicknames, but that's not the right one. I don't know, like, it's not like, yeah. Ava's like,

when she wants you, she wants you, and when she doesn't, she'll let you know. She's particular. Yeah. Sometimes she wants to snuggle. Sometimes she's like,

just leave me alone. I want to be in the room, but don't touch me. Exactly. But it's the best, yeah. So going down even further into your, like,

marriage journey. So you have Jack. And then I'm going to guess because Jack and Charlie are two years apart. So you got pregnant about a year after Jack. Yeah. Good math, babe. Thanks. Good job.

Two minus nine months. So walk us through Charlie's pregnancy in Charlie's birth and how you guys came across Charlie's kind of like medical complexity. Yeah. So totally normal pregnancy, nothing in utero that pointed to any health problems at all. How to, you know, smooth delivery by all accounts. And it wasn't until she was about four months old that we started, you know, things started happening that pointed to like, okay, maybe there's something wrong here. She had started losing weight.

And leading up to that point, she was really, really fussy. like that was one thing she was super super fussy um and we had had like chase's parents i remember at one point had kind of taken us aside and been like i don't know if this is like this level of fussy seems normal but again we only had one kid jack to be honest was a little bit of a colicky kid too and so we didn't necessarily know early on that that you know that there was something wrong um but we went in for her four-month you know routine checkup appointment with a pediatrician and She had lost some weight. So that was kind of the catalyst for looking into all these things.

And then she started having what are called infantile spasms, which are seizures that happen in infants. And even those are, they can be hard to detect because they don't look like, like when you think of a seizure, they don't look like a typical how you would think of a seizure with like convulsions and things. It's this really kind of subtle, sudden movement. It almost looks like a startle reflex in babies. But at that point, we had had her in speech therapy for the weight issue. And the speech therapist was the one who, you know, I described what I was seeing. And she mentioned, like, I don't want to scare you.

But just so you know what you're describing, it sounds a little bit like what are called Immetalspals. Just keep an eye on it. Anyway, long story long, we ended up going, we started Googling and researching, got really freaked out, went to the ER. you know, started running a bunch of tests, and sure enough, she was having these impotal spasms. Impetal spasms tend to be like a symptom or a presentation for something bigger. It's not necessarily a diagnosis in and of itself. And so that's when they connected us with the neurologist and what ensued was like months and months of tests to try to rule out what this, what might be causing these seizures. And it was, Charlie was almost a year old.

before we actually got the diagnosis through this, what's called a whole exome genetic sequencing test. It's this really robust test where they deep died into the genome and they take DNA from mom and dad and from baby and kind of go into the genome and test different areas. And that's how we became aware that Chase and I are both carriers of this really random, rare genetic mutation and it's recessive.

So he and I both only have one copy of this mutation, but Charlie happened to inherit both of our mutated copies of this gene, which resulted in her having this disease. It's called CDG, stands for congenital disorder of glycosylation, like a little mouthful. But yeah, that's kind of how that all went down. And then if you don't mind, I know this is like a mouthful to go through. but could you explain what CDG actually does for Charlie? Yeah, so CDG, it's a, I think, the easiest, yeah, it's a metabolic disorder and the easiest way to describe it, I think, is it's a dysfunction in the process of what's called glypostolation, which is like how proteins and sugars attach each other in the body. I'm sure I'm botching this because I'm not a medical professional. But it's like a really basic function.

in the body. And because there's a dysfunction for her and how her body's doing that, it affects every part of her body. Cellular level. Like it affects all the cells in the body. Yeah. So it's a multi-organ, you know, it has effects on, yeah, basically every system of her body. So for her, it's presented in global developmental delays. She's non-ambulatory. She doesn't walk. She's nonverbal, so she's not talking. She has really low tone, which means she's just kind of floppy, which doesn't have good muscle tone.

Cognitively, she's six, but they'd probably put her, I don't know. We had a physical therapist over recently who said, I'd say, between maybe five and eight months cognitively. I mean, it's hard to assess that, but somewhere around there. So it affects motor skills. It affects eating.

Our girls are 100% G-2-fed, so they don't eat anything by mouth. So, yeah, kind of everything. How many people in the world have CDG? So CDG has a whole bunch of different types. There's over 150 different types of CDG. Our girls type, there's like less than 20 in the entire world ever who have been diagnosed with it. Ever. Yeah, yeah.

And so Charlie has this specific diagnosis, but then you have Ava several years later who also has this type of CDG. Same thing, yeah. Because again, since this genetic exact same thing happened. And like I said, Ava was a surprise. Like once we found out that we carried this genetic mutation, we knew that, okay, having babies, and you know the normal way is out the table now but then along came eva very unexpectedly and she happened to have it as well which is it's one of those like all right she's just take the wheel moments like this was meant to be there's no other explanation for it so probably hard question

but with jack not having cdg and then having charlie and then having aba your love for your child doesn't change that's a given that's just something god puts in your heart which is the most beautiful thing in the world but when it comes to finding answers for charlie and eva for their diagnosis diagnoses sounds right that's one of those i don't know um and just kind of their way of life and how you operate as a family now and all of their like the needs that they have versus jack did that complexity within your marriage and within your parenting ever um challenge you guys to kind of figure out how to balance both? Because I can only imagine with Charlie and Ava, their needs are probably more consuming than Jack. So that difference and balance within your family,

does it ever pull tension with you guys? Yeah. No, I think that's a great question. And I think the answer is yes. I think that there definitely is a different type of tension. I mean, I think just having more than one kid. I think of the analogy of like having a kid is like a slice of pie and you love pie, but then you just add another slice and it's just more pie. So, you know, I think with our girls, yes, there's a lot of attention that they need from a care perspective. But then at the same time, we don't have to like worry about having like locks on our drawers or then getting into something, you know so there are other things that we don't have to worry about that that other parents are having to worry about with small toddlers or children yeah that's interesting because it's it's

just different like the concerns with jack and charlie and eva are just really different um obviously most of the concerns with charlie and ever they're all they're primarily medical right which can be really really intense and really consuming um but when they're when medically things are stable for them in a lot of ways they're really easy I mean I'll have moments where I'm like with you know sitting there with the girls and I'm like you guys are never going to lie to me

yeah you know and like it's always going to be nice to me like and it's kind of nice in that regard because it's true it's like it's just it's so different and the dynamic is really different whereas with Jack I know for me again just speaking really candidly I totally

feel this you know he's the one who's going to have to like function in the world and um you know i i sometimes feel like way more pressure with him to make sure that we're parenting him in the best possible way because he's the one who's going to be out there you know have him survive so to speak and um and i and i think the added layer of you know to your point of making sure that he always feels seen and and doesn't have memories of you know being eclipsed by his medically complex sisters, that's always been really, really important to us. But it's not like they, you know, hand you know, handbook when you have special needs kids

and say, here's how to, you know, make this work with your typically developing kid. And here's how to, like, here's how you parent in this situation. Like, nobody tells you how to do that. And so there's a, for me, there's some stress in, like, navigating that and trying to figure that out. and I think that comes with parenting in general, because there's no parenting handbook, period, right? Sure. But yeah. Let me just say, this is what I love so much about what you guys do, and you've been generous with the content that you've created and shared in your experience. And I think that the more you guys share, just with your communication style and with how thought out you are and with your experiences, I think the better the world is because of,

other people going through maybe not the exact same thing but similar situations so it's it's pretty cool to see that I'm sure it's so difficult to share some of the things that you go through but to think of the the good that it does is uh is amazing so well it makes a lot of people a lot of people I can I remember back to our last interview um RIP um when you were saying when you guys got Charlie's diagnosis, you felt less isolated in the world because you knew exactly what to Google or what, who else to reach out to, or those 19 other families, you felt like you had a community. What you guys are giving to the world as far as like a community is, I mean, priceless. It's truly, it's giving people an outlet to connect to.

I want to go back to something you said about postpartum, if you don't mind. So with Charlie's diagnosis, you were four months, four months postpartum. With Ava, when did you get her diagnosis? So Ava was in utero. I was 13 weeks pregnant when we found out with Ava. So she had CDG. Kind of a double part because it's two different girls. Postpartum, no matter the child, is difficult.

I remember with Andrew, similar to what you were saying, I really struggled vocalizing to him how I almost didn't feel like a human because I felt like I was being just pulled in this direction of mom. I no longer felt like wife because you're just hormonal and there's a lot.

There was no room for that. And I just didn't, I felt like I lost my identity for a while. And that same thing you said of it took a while to feel like me. So now with Charlie's diagnosis, with postpartum, you throw in medical complexities.

I'm curious how that affected postpartum for you, just kind of processing life as being different. And then with Ava, you had to deal with that even earlier. So you had more medical complexities that you knew were coming. Did that affect you as mom? Because our hearts are already torn a million ways as mama. So with Ava, I'm just going to be so honest. When we found out with Ava, that she also had CBG, I'm not going to lie, I was like beside myself.

I was so devastated. And in some ways, I was really grateful that we were able to get her diagnosis early on in my pregnancy because it gave me the rest of my pregnancy to like get to a place emotionally where I was okay with that. I will say this this shouldn't have come as a surprise but it kind of did somehow once we had Ava and she was like in my arms it was so much easier

because now it was like you know that feeling when you just how you feel about your babies and like you said Sean it is this gift from God it's like you don't have to try to love them it's just there and so once she was here it was like oh my gosh you know

it made it so much much easier because now we were connecting with her and feeling all that love. And it felt like, okay, this is, this is going to be great. It's going to be okay. Not to say that we didn't still have those moments of, you know, or things to process. But it became easier once she was here, I'd say. Chase, take me back to that moment when, as Shannon said, she was at this point of devastation. what would you say to yourselves in that moment or like to another couple who is at that point

where they have again it's it's hard to almost talk about because as you say you wouldn't you wouldn't change it and it's like it's amazing right and but I guess the closest way I can put it is there's there's a thousand new things that you're walking into as a as a parent of any new child and medical complexity is like another thing later. on top of that. But what would you say to someone in that position now, Chase? So there's this line that I said to Shannon a couple of times that, you know, that life is going to be even better than we expect, you know, for ourselves. And so I think that I think for us it was just like you, you don't know. There's a lot of unknowns, but you just

know that it's going to be even better than you could have designed for yourself. And it's hard to grasp that in the moment, but I think we've gone through some other things as well. Like my dad passed away two weeks before we got Charlie's diagnosis, like totally unexpectedly. And then I had a health scare, you know, that same year. And so it kind of felt like, you know, when's the, when's the other shoe going to drop? And so I think there was just a, I felt like a lifetime of experiences that kind of happened. And in a very short period of time.

And so it forced us to mature really quickly and to just recognize that, like, hey, what's in our control and what's not. And let's just make the best with everything that we've been given. And Chase did. He said that to me a lot through that period. Like, it's going to be okay. It's going to be better than okay. And something about that was just, it totally was what I needed to hear. but also like to your point and right like that's why i like to be really open and honest about

the full range of emotions that we've gone through the through this whole thing um because i think that's what i hope you know when people find our account and hear a story that i hope it'll make people feel less alone and and feel like it is going to be okay you know because we We know firsthand, me especially that feeling when you're finding out that your child's going to have health problems or that things are just going to be different than what you're pictured and all the emotions that come with that. And to be able to see an example of a family that had been there and it's now in a place where they want to change things and they're living a full life and they are at peace.

I mean, I just, that's what we want is for people to know that it is going to be okay and that they're not alone. Wow. How do you prioritize you guys now? How do you keep your marriage at the forefront of kiddos because it's hard? Yeah. Well, I'm at the forefront of kiddos's career, you know. Like you're, I mean, there's, there's so much competing for our time, right? I think.

They're like, are we doing that? No, I think we, it's date night, I think is an important thing that we do. And then I think for work right now, I'm traveling. And so what's awesome is that Shan's been able to kind of travel with me. And so that will give us some time. That's awesome. just spend with each other. Which is a blessing because, and I don't know, I want to acknowledge the fact that we have

a really great support system and we have that ability to leave together and leave the kids with people that we really trust. I know that not everyone is in that situation, especially with special needs kids. And, you know, and I like to be, like, acknowledge that because that can be a really hard scenario to navigate as well. I'll have families reach out and say, yeah, I'd love to go out with my husband, but who's going to watch my medically complex kid that I really don't trust with anyone, you know? So, yeah, and I love that point because it makes me think of, like, other, like, really small things that, you know, for example, like working out and just scheduling our workouts, like, so we both are able to get the workout. So it's like, hey, you might be, you know, putting the kids to bed tonight so I can work out.

I'm going to get up earlier or like she would take a girl's trip or I would take a guy's, you know, like a guy's trip with my brothers or with friends. And so I think we still tried to schedule in those things and get some time for yourself and then for us so that, you know, we felt like it was more manageable. Well, and to your point about things that feel simple, like one thing that I feel like Chase Snih, always, that has come naturally in our marriage is we just talk to each other a lot. You know, we, he's like my favorite person to talk to. I hope I could say the same.

Of course. And so he's like the first person that I want to, you know, tell things to. We usually spend time every day. And again, it just happens pretty organically, like talking about our day and telling each other what's been going on. And I think that has been really, really important because it's kept our connection strong, even in the periods where, like, it's hard to go on a date night every night. Like, frankly, during COVID, we used to actually be really good about a date night. And then COVID happened.

And that went away, right? And I don't know that we've necessarily, like, gotten back in that routine. We kind of haven't. And so I think, like, finding those simple things that allow you to connect, even when life feels super crazy. You can't necessarily do the bigger stuff like going on a date every night or whatever or every week. I think that's really important. You had said every night for like a couple times.

She said every night. So I wish we were going to. I met every night. It was once, no, it was once a week. Probably once a week or once every other week, you know, I think was what like kind of pre-COVID and then like COVID happened. And yeah, and then it was like, oh, when was the last time we went on the date? It's like, oh, it's been a long time.

So you talked about the strategy with making your marriage a focus. And Shannon, you alluded to Jack not being eclipsed by the medical complexities. What are your strategies or what's your approach there? Yeah. So we decided a while ago, actually, that we were going to do, we call them Jack Knights. So at least once a month, we do. a jack night where it's just us and him so far it's been both me and chase and him i think sometimes we'll try you know just like him and him and chase me and him but we go out with just

him we do something that feels special like one time we um we went and stayed we did a little staycation and stayed in a hotel went to dinner stayed up late watching movies with them and slept in a hotel you know just like i don't know five minutes up the road from our house that's Awesome. But it just, but it was fun. And it, I think it did make him feel really, you know, just like all the attention was on him. One of our most recent IVF cycles, we surprised him in last minute before we were going to go. We had him come with us. So he flew back to California with us. We stayed in the hotel that time as well. And it was just us and him. And we just got to hang out. And that was so fun. We've done simpler things. We went to have, we've done. We've done. drive-in movies we've done you know skiing you know yeah chasing him what's skiing um so just things like that but the individual time and where it feels you know we talk about it intentionally and say like it's jack night we want to spend time with just you buddy let's go do that i love that i've actually had that thought even just with kids in general like now that we have to

yeah for sure i feel like it's very easily it's very easy to generalize your kids is like oh kids like I you just handle them as like the bulk um but I've even had that thought with both of ours of saying like once a month once a week it's going to be Drew's night Drew can go with Andrew or whatever but really trying to have that specialized time for each kid to know that like we see them individually and not just as as the bulk so absolutely so you alluded to IVF are you in your fifth round now of IVF? Or fifth attempt? So we just completed our six cycle.

Six, number six. Yeah, I think our rest in peace episode, we were in the middle of cycle five. And we snuck one in between. And how is that going for you guys? So we actually finally got some really good news that we'll share with you guys. So cycle five failed, meaning we got zero healthy embryos. and we were super bummed about it because we had all of our highest numbers

like highest aid count, highest and fertilized, like it seemed like it was going to go really well and then at the end we got nothing and we were super bummed about it. We decided to do one more round. Cycle 6, all of our numbers were like some of the lowest they've ever been. Like lowest eight count, lowest, yeah, everything.

But we actually ended up getting two more helping embryos. Let's go! I know. If you don't mind me asking, just because I would love to understand the IVF process more, a friend of ours used the same verbiage, and I never asked. But as far as, like, healthy embryos go, what are they testing for? Like, literally everything?

Yeah, so they're testing for a slew of things that you're generally test for, like, you know how you do the genetic testing um just in a normal pregnancy they do all of that but then in our case because we know exactly what our genetic mutation is they created it's called like um a primers that's it's a test where they can go in and identify that specific gene and make sure that the embryo doesn't carry um the gene mutation interesting um which would not have been possible if we didn't actually have our diagnosis, you know, so to your earlier point about so many things become available once you actually have your diagnosis, that's one of them. Like, there wouldn't have really been a big point in doing IVF for us if we didn't have.

So then, if you don't mind me asking, within each round of IVF, were multiple embryos coming back with that same genetic mutation? Yeah, so either that, it was either they would have CDG, or they would have something else like chromosomal abnormalities. Yeah, I mean, I will tell you, nothing has made me appreciate what an absolute miracle it is

that people have children just naturally than doing IVF because suddenly it's like opening the hood of a car and you see how the whole thing works and you realize like how much has to go right in order for a healthy child to come out the other hand, so speak. it's crazy.

I mean, that is nothing short of a miracle. So then now you guys have how many healthy embryos going into the next step is? Fertilization? I don't know. Actually. Transfertilization. I'm just. Yeah.

Wow. That's awesome. Wow. So we have four now. Dang. So are you guys? at a stage where you're thinking about like it's time for transfer are you just wanting the opportunity and option for when the day comes um no so we totally have a plan we're um we're gonna take

a little break and just for me i feel like i just need a little break to feel normal again physically for my body to just kind of recover because you know we did idea pretty much like back to back to back cycles for like over a year which just takes a toll on your body and so i think we'll take a little break and then transfer that's awesome hold on so yeah and you know fingers crossed i'm so excited for you guys uh thank you for sharing the the happy news with with your situation since there wasn't necessarily like uh i don't even know what you call it that i know people who do IVF because they don't have the, yeah, because, yeah, infertility. So did you have to do the shots and the whole thing, or is that, like, okay, wow.

Everything. It's the same process. Yeah. So that was another really interesting, I don't know, just a layer of emotional processing for me. It's like, once we found out Charlie's diagnosis and realizing like, oh, my gosh, we can't just get pregnant naturally and knowing that, like, what a blessing it is because there are so many women who struggle with their couples who struggle with infertility um yeah i think we're a little bit naive going into ivy i think oh my gosh so nice round one we're like sound like it's gonna work we're gonna

be good well because our thought was like we've never had trouble getting pregnant like this should be you know slam dunk like we'll just get in get out we'll be good to get to go oh man nothing has been further from the truth that threw us for a loop for sure Sean and I talk all the time, like, you know, before we had Drew, before we had Jet talking through, but a potential third, it's such a daunting thing. Especially, like, when we had Drew and we had some complexities there, she was like a two vessel baby and then, like, had, uh, some potential, like, she had kidney issues in utero, she had growth issues in utero. She just, yeah, she was one of those that had like a lot of red flags. So we didn't do genetic testing. And it was one of those where we, we didn't know what, you know,

delivery day was going to bring. And the realization that you're not in control, even with your experience with IVF, like, it's such a humbling experience. And it's terrifying on the one hand. But I think it's almost that uncertainty that leads to this, you know, the fullness of it and what it is, where it's like this hold on loosely concept with parenting.

And even now Drew's two and a half. And she's like, you know, functional-ish, where it's like still, you want to hold on tightly through the whole thing, through pregnancy, through like our experience, parenting so far, we're like, ah, I just want to control it. But you, like, that's not what it's about. It's almost like this process of learning that it's not about that. But anyway, that's my, that's my thought for the day. No, it's so true.

So true. No, it's so, so true. I mean, it just forces you to walk in faith, not sight, right? Because exactly to your point, it's like you just realize how little you do actually have control over. And it's just like, all right, like, Jesus take the will. I mean, I've got to give it to you because I literally have no choice. Like that's, that's where we're at. Last time we talked to you guys, you had talked about Ava, how she had had a setback.

I was just curious how she's doing. Oh, thanks for asking. She's doing better. Yeah. Yeah. Ava's stepback was hard. She, so originally, Ava seemed like developmentally she was going to be the less impacted of our two girls from the disease. and then she started having seizures, which just later, Charlie had seizures really early on.

Ava didn't start having them until around, like, seven or eight months. And then she had an asymptomatic UTI and urinary tract infection, showed no symptoms until it was, like, severe. And she just had a really, really horrible reaction to that, and it kind of changed everything. It changed her baseline. It just really set her back. and and it was like a reset to like basically to not even like a newborn it was like like a it just suddenly seemed like everything was different

just way more severe but it's been really encouraging to see her I mean her health still is I would say more precarious than Charlie's you know it's not a stable but she has progressed her health is improved and I will say it makes those moments when she's doing really well that much sweeter I mean it really does because anytime Ava's laughing or engaging or she's in a place where she's making good eye contact she's um you know giggling social yeah um we're just

like over the moon about it you know because it doesn't happen quite as frequently as it as it had she's in a good she's in a good place right now and it's like anytime we're in that face we're just like thank you and make it last you know Chase can I ask because you work like a big boy job like a legitimate he's like a professional big timer yeah there's I mean any given day there could be one of a million things happening that was unpredictable unforeseen And you're showing up to work every day. How do you approach that? Like, how do you deal with that?

I mean, I work from home. So that's a nice, and they're pretty flexible about stuff. But, yeah, I mean, I think I've always made it clear with the companies I've worked at that when there are things that come up with their medical complexities, that, like, I make myself available for that, that my family comes first. you know so there's been times when charlie's g-2 popped out and i was like hey i got to go and um and yeah so i think i've just made it a priority that you know whatever is going on with work can wait um you know with some of those things and and but then at the same time it's like well then

later at night you know i might need to make up some things i need to do or or get some things to people. But yeah, I mean, I'm lucky to have that flexibility right now, I think, with the situation that COVID's created with kind of flexible work, it's a lot easier now than it was previously. But, yeah. TD Bank knows that running a small business is a journey, from startup to growing and managing your business. That's why they have a dedicated small business advice hub on their website to provide tips and insights on business banking to entrepreneurs, no matter the stage of business you're in. Visit TD.com slash small business advice to find out more or to match with a TD small business banking account manager. Chase does a really good job of balancing

all of that. I have to give them props for that. I do have to say, we talked about this after our first interview that we keep alluding to. Your guys is like outlook and how you guys present yourself and it seems genuine. No, I'm not accusing you of not being genuine. I just mean, it seems real. You guys just seem like such a good team. And I feel like there are so many people in the world that paint a picture, a doomsday picture when presented with something that they didn't see coming.

And you guys, I feel like, make everything seem manager. I don't know how to say that. It's like, it's almost like a bring it on mentality and I love it. It's inspired. I don't want to say inspiring. It's just, it puts things into perspective that, yeah. Thank you. Thank you, Sean.

I appreciate that. I mean, and we, Chase my, we always want to make it really clear. Like, you know, it's not all like sunshine and roses over here where, you know, I never want to like, we try to keep it real. and be really transparent about all sides of life because we never want to make it seem like everything's great all the time and nothing's ever hard by any means. But we do, you know, to your point about like the perspective

can sometimes be June's day when things go really differently than you hoped. I think that's what we hope that our story and what we've had to go through can, like the way that it can add value is for people to know that it doesn't have to be that, you know, that things can go really differently than you had planned and still be just as beautiful, just as full, just as amazing as what you had hoped to, you know, as your previous hopes. Different, yes, but not any less than what you had hoped, even with these huge changes, like medically complex kids. And you're going to feel the gamut of emotions.

Like in any given day, you know, like it might start off really great. And then, you know, maybe this is too personal. But Ava's been struggling with like constipation and just kind of GI stuff. And so the other day we had to give her like an enema and stuff and give her a whole bunch of Miralax like just like just to like get. all get everything moving and uh and it's gross you know like it's like so i mean there's just things that like you know when you have like a a six year old blowout versus like a little a little you know a little baby blowout it's a little different you know so but but yeah i mean i those things happen and i think that that that's okay um and um you know it's it's just a different

a different experience but but it's you know there's there's great moments there's hard moments that's just a different kind of hard but then also different moments of joy and kind of seeing those moments where you're you know where eva's smiling and we're really excited about that and not necessarily

thinking like oh you know she has missed you know a lot of milestones or she's trying to catch up it's like she's kind of on her own journey so I think that we we and again I don't feel like we always have I have, how do I say this? So we have to remind ourselves of these things as well. You know, like I don't think that in any given day, when we go through those gamut of emotions,

we're like, okay, at the end of the day, like, at the end of day, we're like, that day kind of sucked, you know, or like, that was a really hard day. But, you know, we gave it our best and we just told that tomorrow, you know, is a better day maybe. Well, we've had to really embrace, like, I call it, like, and emotions, you know, like. that it's not one or the other you know usually like the way we feel about things isn't just one or the other so and we've we've learned a lot about that in in our in our experience um and learning to be okay with you know feeling multiple things about about any given scenario at the same time you know like and that it's okay that it's okay for me to say um you know i feel

like the most blessed mom in the world to have these two perfect little girls as my children. And I also have, you know, sporadic moments where aspects of their diagnosis will make me feel a little sad or will feel really hard and I'll have to like give myself, you know, hold space for myself to mourn the loss of the life I thought we were going to have with them and to just and to hold space for myself to do that and give myself grace and know that like it's okay to have those moments where I feel sad about that. My role for myself is I just never let myself stay there. You know? But yeah, I mean, and emotions. I think we need to normalize that you can feel multiple things about something simultaneously and it's okay. Is the story of you linking up with

another family who has the same diagnosis because of social media that's that's real that's true you stay in contact with them that is real that's true yeah social media yeah man i mean and we met up with them as well we like took pictures and hung out with them yeah like meet them meet their they so they have a um it's okay then i'm sharing this i think she'll be okay with it but they have they have a child with the same type of cdg as our kids their son it's their son his name is charlie wow So funny. It's just so crazy. And we found each other, yeah, through social media.

We had been back, they live back east. We were back there for a medical visit. And so we got to go to lunch with them. Our Charlie's got to meet. Yeah. I mean, it's been amazing. How many people carry the recessive trait, do you know? Is there a stat on that?

Oh, my gosh. No, because that's what's so weird about it is that you wouldn't really, you wouldn't really know. Like our geneticist has said, any person that you see walking around, on average probably has between like five and eight genetic mutations, but just really random crazy ones that, you know, kind of like ours. And the only reason we ended up knowing about ours, obviously, is because we happen to marry each other and we happen to have the same mutation. But had we not, we wouldn't know that we have that, you know?

You wouldn't know to test for it. Yeah. Yes. Because most of those mutations, unless you procreate, with someone who has the same one which is the odds about are so unlikely although here we are one in the million one in the billion

they're you know they're benign like it doesn't really it's kind of irrelevant but yeah the whole world of genetics is yeah I am I'm such a fan of you guys

honestly like Sean was saying your perspective is amazing and I appreciate it so much. I look back on the words that you describe Chase with, which is like peace. You still feel that. I don't think that's probably changed through everything that you guys have been through.

And it's cool to think that you describe Charlie is like sunny. That's just like, man, you guys embody that. Yes, it's complex, but looking towards the better side of like Charlie's sunny. And I find peace with Chase. even though I'm sure it's wild over there. And Ava's particular. It's just cool. And I have a goal to get chase on American Ninja Warrior.

Do you have a video of yours? I'd love to see yours. I'll text it to you, I'll text you. I can't. I can't. Yeah. But thank you so much for the time. Again.

Yeah. We're going to delete this so that we can get another hour with you. guys yeah yeah come out to Nashville and hang with y'all yes please we would love that I would love that anyway but no we're huge fans of yours too and we just admire all that you guys do it blows our minds chase and i've talked about it up man what amazing well for those listening who want to find out more about Shannon chase not so much on social media but Shannon particularly we'll link her stuff down below highly recommend giving it a giving it a she does an amazing job.

So thank you guys for the time, and it's good to see your faces. Thank you. Thank you.