UNspecial LLC: was a bombshell. Yeah, so we had no idea and we I was seeing a high risk doctor. It was every two weeks and then at 20 weeks. ⁓ I had twin to twin transfusion. So that's pretty much where Hazel was giving all of her nutrients to have me. So she she quit growing. So we went in and the doctor was like, you've got to get to Houston right now. or you're gonna lose them. You've got to go get the surgery. How do you hold grief and joy on a single day? This is the Unspecialed podcast. We are a space for parents to be seen, heard, equipped, and inspired. We're not here to tell you what to do with your child or present the latest and greatest behavior modifications. We are simply here for you, the parent. And our goal, our hope, is that through every one of these conversations, you leave feeling a little bit more inspired and hopeful. We are glad you're here. Hope you enjoy this next episode. stories change you just by hearing them. Today's guest is a mother whose world shifted not once but twice when both of her twin daughters were diagnosed with spinal muscular atrophy. And what followed wasn't just hospital rooms and hard conversations. It was a complete redefinition of strength, love and purpose. Out of unimaginable challenge, she built something beautiful, house to harmony, of which I am a consumer of, I'm a beneficiary of, a space born from lived experience and deep compassion. This isn't just a story about surviving the unthinkable. It's about turning pain into presence and fear into fierce grounded love. Today on the Unspecialed podcast, we have Annika Worley and ⁓ super excited to get into your story and just how you go about life with such peace and harmony. Annika, welcome. Thank you and thank you for having me. Yeah, like I was saying, I'm super excited to have this conversation because there's so much conversation on autism and I think like families such as yours and other families who are dealing with other special needs or physical disabilities, like you guys are forgotten. because it's all about autism. Which is great. I'm glad there's so much conversation and all these parents are being heard, but I feel like you are kind of on the fringes and your story doesn't get heard. So... Yes. So yes, so I, after they were diagnosed, I immediately went to social media and I would type in SMA and find... Other moms. So there were a few there were about two to three moms that I stayed in contact with that were kind of like helping me through it. There were whenever I posted about it, there was actually someone I know that wanted to connect me with someone who actually lost their son to SMA. This was before treatment. So like I was talking to these moms and their kids had like SMA type one wool. The types, so there's like four types and like the higher up is like better. Okay. But with treatment now, so before there wasn't any treatment. So if you got diagnosed with SMA, it was kind of just like a, you're gonna have so many years pretty much. So I had been talking to these parents and their kids had SMA type one, well, they were all walking. And so we were diagnosed, they were diagnosed with SMA type two. So I was like, oh, well, that's supposed to be like the stronger type. maybe my girls will walk. then the doctor was telling me like, no, they won't walk. So it's all very confusing. And, um, but pretty much if you get the earlier you get treated, the more stuff you won't lose. Yeah, yeah, yeah. So like what are the treatments? They are gene therapies. So the girls got Zulgensma, which is a one time gene therapy. And I think they're changing it now. But whenever they were diagnosed, you had to get it before they turned two or they couldn't get it. And it's just a one time IV. You go in and you're at the hospital all day, make sure they don't have a reaction. ⁓ So there's that one. There is Spinraza, which is an injection in the spine. And then there's Evrisdi, which is supposed to be like Spinraza. Just you take it orally, daily. And that's what the girls are on now too. So I think those are the only three treatments to stop the progression of SMA. ⁓ the girls now are on, I don't know the drug name, but the company is scholar rock. We call it their muscle juice. and it pretty much acts as like, just builds their muscles. It helps their muscles grow. ⁓ but it's not like, I don't know what other diagnosis takes it, but from what I understand right now, it's just for SMA. And we've seen great improvements on it. We've been on it for like. Probably five, six months. And we've seen some pretty good results with that. But yeah, I don't know. You have to like stop. So with like the three gene therapies, that stops the SMA from progressing and getting worse. Okay. So the purpose of the gene therapies is to stop it. Does it improve? their challenges as well? Um, sometimes. So for my girls, they got They were 14 months old so like they'd be they could sit up But it's like they sneezed or something they'd fall over and then they couldn't get back up Okay, well with so then they had this little ginsma and that helped them Not after they got it. They kind of got the strength to where they could sit up and they wouldn't fall over as easy So it's like stuff like that ⁓ And the doctor was like, Zolgensma did what it needs to do. Now we need to look on to another therapy to see if we can get some mobility or strength back. So I think it's, each case is different. You know, some kids get Zolgensma and they're walking in four months, but it's all, it's each case is like so different. Yeah. Man, does that... Does that drive you crazy? you see people probably on these gene therapies and you're seeing what it's doing for their kids and then you take it for your kids and then knowing that it's all different depending like does that just. Yeah it kind of comes in waves. In the beginning. In the very beginning after we were diagnosed I was very hopeful talking to these families that their kids were. taking their first steps and all that. And I was like, ⁓ that's awesome. don't go to Google. Google is horrible. So I, and I stayed off Google. I wouldn't research anything because again, these medicines are new. So all the stories you're going to hear are like these kids that didn't make it because of SMA. So I'm like, I'm staying away from Google right now. Cause I can't take that. Right. But it does like, Yeah, I see like even kids that were diagnosed and treated at the same time as my girls. And there was a little boy that, you know, is walking and all this stuff. And there was even a family we met at an intensive therapy, the exact same story. And she actually got, Zuljinsma at the same time we did and got worse. She uses her wheelchair primarily, but she can get up and walk. Okay. So I'm like, What am I doing wrong? You know, like all that, but it does sometimes. But then I also have to remember like, this is the running their own race. Like I'm not going to compare them to someone else because this is Hazel and Hadley's race. And it's, you know, they don't, it doesn't help comparing them at all. Right. Right. Which brings up an interesting dynamic. Cause So Hazel and Hadley, how old are they? They'll be five on the 20th. They're about to turn five. They're twins, correct? Mm-hmm. What's their dynamic like? It's best friends? ⁓ They're more five-year-olds? Yeah, they're definitely sisters. They, you know, it just kind of depends, because we had... Hazel was admitted to the hospital in 2022 and had leave. Obviously we didn't have her up at the hospital. And they were like, where's, where's my sis? I want my sis. But then like every day I'm like, try not to fight for five minutes. Please. Like I can understand how stressful it is to share literally everything, but let's just try to be nice for five minutes. You're right. ⁓ man. So then do you find yourself comparing Hazel to Hadley or Hadley to Hazel? Not really because for a while they were on the same track but they have their they still have their identical twins but they still have their differences. Hadley has a little bit more of a curved spine and I think that that kind of like hurts her in a way of she's not going to be able to do some things that Hazel isn't doing. like Hadley's army crawling now and Hazel... was doing some type of crawl. We love it. Hazel crawl. But it's not like, it's gonna be, it's gonna be the new crawl, hazel crawl. But there's some differences. And for a while I was like, okay, let's try to get on the same page here. Because I don't want, I just don't want, they're, I don't want anyone to feel like they're like, falling back or falling short. So I'm like, you know, celebrating everyone's wins all the time. And they like love that whenever like I'll be like, do it cleaning or something. And they're like, hey, mom, watch this. You know, like when kids are like, watch this and then they don't really do anything that exciting. they love hearing praises and they'll be like, call so and so and let them see my new trick. And I'm like, okay. So then I'm like FaceTiming everyone and everyone's like, woo. They love like the praise and all that, which is great. That was funny. No, no, I'm just thinking of my kids and they'd say same thing. I'm like, you just jumped off a box. Like. Yes. have nieces and nephews and they're like, they're like, watch this. And they just jump off the couch and I'm like. Wow. That is so cool. Let me try. But then I always think to you like, man, what if I had that mindset on things? Yes. Just like, yeah, you can learn a lot from them. ⁓ What about so is is SMA? When do you find out about it? So now it's on every newborn screening in the US, all 50 states. So for when a when you have a baby, there's a newborn screening and it was finally ⁓ added at every state has it. They should know right as soon as you have that newborn screening results back. So it's birth. ⁓ There was this one story that they found out that a lady was pregnant and the baby was going to have SMA. So they actually treated her baby while still like still pregnant. I don't know. I haven't heard anything about that, I was like, that's like stuff is changing. So I feel like. a lot more kids are going have. ⁓ like more chances and be more mobile with SMA. Like it's gonna look totally different now because everyone's gonna get treated at birth or a few days after. So you said you didn't find out until after birth. Was there anything, let's go back to the birthdays. ⁓ Was there anything that you, I mean, these are your only two kids, correct? So you're new mom going through pregnancy. Anything happened in pregnancy? Like something was up maybe that to tip you off or is this like, it was a bombshell? Yeah. So we had no idea and we, I was seeing a high risk doctor. It was every two weeks and then at 20 weeks, ⁓ I had twin to twin transfusion. So that's pretty much where. Hazel was giving all of her nutrients to Hadley. So she quit growing. And so we went to my... Well, it was actually funny because Monday, I was like, I don't feel good. So I had actually gone to the ER and they like tested me for everything. ⁓ And then Tuesday I had my OB appointment and I told her like all everything but I was feeling and she was like it's just cuz you're pregnant with twins like you're measuring further along than you actually are like your body's just tired. Well then Wednesday morning I had my we were about to walk out the door for my high-risk appointment and he's the one that does he did all of the ultrasounds checked on the babies all that and We were about to walk out the door and the ER called and was like, you tested positive for COVID. ⁓ And I was like, my mom was taking me to my appointments and I was like, do we need to cancel it? Yeah, my mom was like, do we need to cancel it? And I was like, I need to check on them. I have such a bad feeling. So I was like, I'm gonna, you I'll my mask. And it was during the COVID day. So it was like, everyone was very strict. But I didn't have any like COVID symptoms. Like my body was just hurting. And so I was like, I'm gonna wear my mask. I'm checking on these girls and then I'll tell them tomorrow. Like I'm not doing it. So we went in and the doctor was like, you've got to get to Houston right now. or you're gonna lose them. You've got to go get the surgery. So we got there. How many weeks pregnant are you? 20. 20? Mm-hmm. And they were like, Hazel was like eight ounces, and Adley was 11. So like there was, it was very scary. So we went to Houston and they were like, yeah, you've got to have this surgery. You know, sometimes when we go in there and we're actually in there, they could be sicker than we realized. Do want us to save one or? ⁓ my gosh. So I'm like, and they're trying to kick my husband out too, since they found out I had COVID. And I was like, I'm not, I was like, I am not telling you anything. I'm not going through this alone. Like he's staying. Like we live together. Right. Right. And the doctor was like, you've got to answer me. I will get your husband to stay, but you've got to answer me. And I was like, clamp us all. I'm not doing it. Clamp them, clamp me, then go ahead and clamp my husband. Cause we're not, we're not doing that. So all of that had happened. We had a lot of like complications during the pregnancy, but a part of it was just having twins. And then we had them, they were born at 32 weeks. So they were in the NICU for two months. ⁓ So then after they came out, they weren't hitting any of their milestones. Wow. Okay. And their pediatrician was like, well, it's cause they were in the NICU, they were premature. ⁓ You will have to do therapy. So then we went and did, There was a place called ECI. It's like through the government. It was free. They come to your house and they do therapy. And it was the biggest joke. And I kept on telling them, I'm like, should we go see like a neurologist? Like they're not, they're not doing anything. They can't even, they can't hold their own bottles. Like, and we're getting like closer to one years old. And I'm like, they can't hold their head up on tummy time. They can't roll over it. Like, do we need to go see a neurologist? And they were like, no, it's just prematurity. And it was like, okay. Well then I finally was like, I'm just going to pay out of pocket and go to a different therapy place. still go, like, we'll still stay in contact with ECI because they had some good benefits for whenever they turned like three. don't know. We don't have it anymore, but. So I like still saw them and then, um, So we started going to this other place and they were like, I feel like you need to probably go see a neurologist. Like I would just, just rule it out. It could be nothing. And so, and my mom used to be a nurse. So she like researches everything. Well, she was like, whenever I put in like what we're like seeing it's coming up as SMA, but it says that SMA kids don't live. And I was like, no, like don't. Don't even say that. And that was the first I've ever heard about it was when my mom brought it up. So we saw our, um, we saw this first neurologist and I was like, I want a second opinion. I don't like it. Um, but she was like, uh, she ordered an MRI and did genetic testing. So they only had it for, we only did one. for one of the girls. And I was like, sick to my stomach about it. I was like, cause they have to put them under to do an MRI. And I was like, I just don't like, I called so many times up until the appointment and I was like, hang up. Cause I was about to cancel. I was just like, I don't have a good feeling about this. Well, then we got in with a different neurologist and it's who we see now. And She took a look at him and she's like, it's SMA type two. We can't do anything until we get the genetic results back, but it's SMA type two. And I was like, okay, well we have an MRI scheduled for tomorrow. She's like cancel it. They cannot go under. They're not strong enough. They won't wake up. ⁓ my gosh. I was like, ⁓ gosh. Like I knew. just knew. You knew you're the mom. A mother's father's intuition is everything. Yes. So We had like... And at that appointment, it was just me and my mom whenever they were diagnosed with SMA. Sorry, sorry, You were a day before the scheduled MRI when you found this out. Yeah. So we saw her, we saw the neurologist and then the next day we were going to go in for the MRI. ⁓ good for you. Just keep asking and searching and following your mom. Yes. No, I think I was probably going to cancel it either. I was a nervous wreck and I guess. But we had. What was my train of thought? No, so yeah, the MRI got canceled. The neurologist said SMA. She can't, they can't do the MRI. Yes. Oh yeah. So then at that appointment, whenever she was like, it's SMA type two, I'm pretty sure I probably like blacked out or something. And I was like, hearing things, you did not just say that because the last thing I heard about it was they don't live. They don't make it. ⁓ man. from when my mom researched it. So I was like bawling and that day happened like everything was happening so fast. So she's like, I'm not going to say anything until your husband's here. And I was like, ⁓ my gosh, we're going to lose them. Like, why won't you just tell me? And then like after that, like PTs and OTs came in there and they were like, they'll need to be fit for like their wheelchairs. And I was like, Bring the doctor back in here, because what do you mean? And I was like, they need wheelchairs? And she was like, yeah, they don't, type twos don't walk. So I'm like getting all this. And like, she's like giving me, and I'm like, just tell me they're going to live. And she was like, yes, like absolutely. You know, there's new treatments now. And then I told my husband and he's like, why is she waiting for me? That was the biggest thing. Because we were like, what does that mean? But I she just didn't want to repeat it 100 times. ⁓ Yeah, that I was like, and my mom is such a positive person and like researches and all that. So she was doing all the Google and she's like, just watch this video. You know, it's very, it's inspiring and it's positive. Just watch it. And I was like, mom, right now I just want to cry. I don't want, I can't be positive right now. Like I just got this diagnosis and it's hard. You know, and then I'm like searching and it's such a rare thing or people, lot of people don't talk about it. Like a lot of people aren't open about it. And that's what kind of drove me to start posting about it and like showing our journey because nobody talks about it. Everyone, you just see all those, you know, Pinterest perfect families and moms posts. And I'm like, well, we let's change it up because there's nothing wrong with it. Yeah. Man, my first year teaching, my first year in special education, I was an aide in a kindergarten class and one of my students, she had SMA and ⁓ she was the happiest little girl I think I've ever seen. She was always smiling and giggling and she always like trying to prank everyone and she was so small and little. I was like, you're trying to prank me right now? ⁓ Yeah. But, That's heavy. How did you get through? And you knew nothing about SMA other than a Google search that says they don't make it. And then you get the news that your twins have SMA. Mm-hmm. How did you fight through that heaviness? You know, it was, it was really hard because I had my mom who's like, we're, we're going to, but I'm like, okay, but what I'm like, what if, what? And my mom's like, don't think like that. Like, it's fine. Have you, have you been watching these videos? And, and I would, ⁓ but I think that like the hardest part was like, I thought we were going to have. It was a life I didn't expect that we were going to have. ⁓ And I don't know how I got through those. You did. There was a lot of appointments and testing and I was like, ⁓ my gosh, is this my life? Like, yeah. were you doing before kids? You're working, I'm guessing. Yes, I was doing eyelashes. I was an ascetician. Yeah. ⁓ and then once we found out, and it was really early on, once we found out I was having twins, my husband was like, you just need to stay home. Like I don't want, you know, the stress of anything to like, yeah, or you were the girls. So just, you're fine. Quit working. So I quit working early on in the pregnancy. Okay. So yeah, I worked for like a few months. Now you're five years in and look where you are now. Would you say your experience then with the medical system shaped you into the advocate you are now? Because I mean, this whole early days, the first year you were dismissed, like questioned, but your intuition kept guiding where you went. Yes, and you know, having so many people like push us away from not seeing a neurologist and not seeing and not looking deeper into this and just saying it's prematurity and all that I'm like can I trust you all? You know? and yeah, and with like, insurance and everything, I'm like, really, he'll really let some people down. It's really, because with the, we were on, we had two insurance for the longest time. So we had our primary insurance insurance and then Medicaid. And Medicaid had been paying for all the therapies, all the equipment, all of the treatments, all that. And when we lost that, so we lost that right before we got their walkers. So then we couldn't even get their walkers. We couldn't go get a sleep study done. ⁓ And like all this other stuff, and we lost their therapy that we were going to weekly because our primary insurance only covers like 10 sessions a year. So then that's when we started, we were going to look into doing stem cells and the doctor was like, let's wait on that. Go to this therapy, like intensives, they're all over the world, it's called NAPA. But insurance doesn't cover that. So we're like, fundraising, making t-shirts and doing all this stuff. last year we went three times, but we were trying to go like four times. But I mean, I'm like, how many people want a Hazel and Hadley shirt? I'm about to make another one. But there is like, so whenever we lost Medicaid and I had like reapplied, Cause I was like, surely they're not going to deny us. Cause I know that there's like a Medicaid that's like for like disabled kids or like people with disabilities. Yeah. and I was on the phone with them. We had like a little interview and after the interview, they were like, okay, you don't qualify. And I was like, okay, do y'all not have anything for like, like I have twins with disabilities. Do y'all not have anything? He's like, no. He's like, okay. ⁓ Awesome. Y'all should look into doing it. But yeah, it's just, it's stuff like that. But, and I was angry, you know, after we lost Medicaid, I was angry, but I'm like, you know what, we're gonna, we'll find a way. ⁓ And we could honestly find better therapy than what we were getting anyways. So, it's got to do a lot of fundraising. A lot of t-shirts. ⁓ It's an interesting point that I don't think a lot of people realize, and especially a lot of our listeners can relate to, that not only are you battling through a new diagnosis, a different way of life, something that you could have never foreseen this would be your reality. But you're also, you know, trying to take care of yourself and stay strong and keep showing up for your kids. And then on top of it, you have to fight for all of this insurance and the finances. Like there's so much going on behind the scenes that I don't think people realize. the insurance fight, I mean. As a lot of our listeners know, we've been in a cancer journey for two years. And just navigating the insurance and the finances, it's like a full-time job. And trying to find the right therapies, or do you try this one or that one? then people are big-hearted and good-willing, and they want to offer their advice or options. But it's like even navigating all the different things that people send you, it's like, oh my gosh, it's so. Yeah. And then you obviously want to do everything that's best for your girls or in my case, for my wife. it's like, it's hard to get through it all. just. And then at the end of the day, you just kind of make a decision and pray for the best. Yeah. What is what is one thing that you had to learn really fast that nobody prepares you for? in raising twins with SMA or just medically complex kids in general? ⁓ One of the things is, you know, advocating and staying on top of these doctors because these doctors have millions of other patients. So like they're not just sitting there thinking about Hazel and Hadley. ⁓ And we got very lucky with our doctor. She is, you know, I do think that like if something comes up, I do think that she has Hazel and Hadley on their mind, on her mind. ⁓ And you know, you just have to go. You have to do things on your time because, know, you just don't know what kind of day it's going to be. And it's not. Like, whenever I was pregnant, because there wasn't really much time in between, like, me working and when I was pregnant, but, you know, I could just get up and leave the house and, know, leaving the house didn't feel like. Right a mission. Yes And so like if I want to go to Target or the grocery store, I'm like, okay, I've got their wheelchairs. I've got you know all this stuff ⁓ And it's just, or like when people are like, let's go to lunch. And I'm like, bring it to my house. Right. Right. But then you want, you want to have, and there's some days where I'm like, okay, we're going to go run errands and y'all are going to go in your wheelchairs or your walkers. Like they also need to feel and be out there so that it's like, ⁓ They love to just. It's fun. how would you define strength? Strength for you is obviously something. I feel like you have a different understanding of strength than most people do. It looks different every day. ⁓ Some days are really hard and I'm like showing up and doing the bare minimum is all I can give today. But like, I will show up. ⁓ There's some days where I'm like on top of everything and we're doing their workout and their standing frame and checking all the boxes. But the one thing that I remember and I don't do for a while, I was very strict about doing standing frame and workout every single day, even Saturdays and Sundays. And then I was like, well, this is. This is their childhood. I don't want them to feel like this is like that it's like consuming us either. So I'm like, we're going to get like during the week, we'll have one day where we don't do any of that because they hate the standing frame. Like one day a week and then Saturdays and Sundays. Like we're not doing it because I want them to also have like a childhood. Right. ⁓ Yeah, but I just think being there for them and advocating for them is just what we have to do. Yeah. So then how, I'm going to listen closely to your response on this because this is something that I have to work through daily. How do you hold grief and joy in the same day? Like I said, it comes in waves and I'll see. They'll say stuff like. Like, for instance, they do dance and their walkers and it was the first day back after summer break or whatever. We had taken a break and it was a new season and we were getting ready and they were like, Oh, do we not have to use our walkers anymore? Since we're bigger? Like, can we walk now? And it like. hits me or they'll say we were on our way somewhere and we passed by school and the kids were at recess and they were like mom when we get bigger and walk can we go do that and it it brings me joy that they are so optimistic and determined to walk but it's also like i i know more than you all and i really hope and I do believe we're gonna have like, I believe they'll walk one day. ⁓ So I think it's just the way you look at things. There's days that I'm like, you know, on social media and I'm seeing like these kids do all this stuff and I'm like, ⁓ That looks different for us, but it's okay. Like, they're happy. ⁓ So yeah, it's crazy like kids and how they perceive things and process things. I mean, even the other day, my seven year old, we were talking to her. I'm in Mexico right now with my wife and they haven't seen mom in 70 days and they're asking, you know, I just something about being strong came up. And my four year old was like, ⁓ you know, dad, dad's really strong and, mom's getting stronger. And, know, they say those little things that it like you said, like it hits you and you're just like, wow, they, have such like an innocent perception of things. And I feel like when you can like adopt that and just be like, yeah, you know what? I am getting strong or even by seven year old, had a when she was like four, our house was full of mold and she got really sick in the ER a couple of times. And then she dealt with allergies up until like five, six months ago. And in that time, I remember saying to her, like, you're going to be strong someday. And then she's like, I am strong. yes. You are. They just kind of put you in your place. Yeah, they they'll say like we had at dance, people will be like little kids will run up to them and be like, what are these? Like, why are you in these? And they were telling me that ⁓ they were like people were asking like why we were in these. And I was like, ⁓ well, what did you say? And she was like, we told them that it helps us walk. It's so we can walk and dance. ⁓ Totally. ⁓ that's crazy. Well, so it's safe to say that, you know, some parents, people can go through hard times and hard situations and just survive. Right. And there's one thing I've learned on this podcast and sharing space with powerful parents like you is you turn that, I'm gonna say pain, but hardship into something more. And you built House to Harmony, which is awesome. And I was telling you, I came across a post a ways back and I'll read it. The caption was, this is how I stopped drowning. And when I saw this, it was at a time where, so your advocacy is working. Even if. I don't have the same journey as you at all, but the journey I'm on. I saw that and I was like, huh, what does that mean? And then your ⁓ caption is how I stopped drowning, not by waking up early, not by trying harder, which is common, like that's what you do. You just try hard, not by lowering my standards or giving up. You said I was drowning because everything depended on me, the routines, the cleaning, the meals, the therapy work. the mental load no one else could see. I wasn't failing, my home just didn't have a system that supported our real life. And that part hit me because it was like, it's so easy to try and live in how you thought things should go and you don't adapt your life to how things actually are. And so you said, stopped forcing myself into routines that weren't made for us ⁓ and built a flow. that worked with our days, not against them. That's what changed everything. Less chaos, fewer mount downs, mine included. And a home that finally feels supportive instead of demanding. And if you feel like you're barely staying afloat, you're not alone. And it doesn't have to stay that hard. How did you get to that place to turn your chaos into something that works for you? Before the diagnosis, I found out I was having twins and I was like, okay, if there's one thing I'm gonna do is get them on a routine because I'm not gonna survive. And of course some routines work and some didn't. And for one thing, like nap time, that saves me. That saves my life and they have had the same nap time since they were born. So around 11 o'clock, They know like, okay, I'm getting they get tired every single day around 11 and they go take a nap from 11 to 2. And that has stuck with us. Now, after the diagnosis, everyone was like, well, you're not going to see results just from going to therapy once a week. And if you're only doing it once a week, you're not seeing results. So you need to also be doing exercises at home. Like 30 minutes each and I'm like, well, I have two, so that's an hour that I have to, but like on top of that, I had to do cough assist, I had to do standing frame, I had to make sure they got their medicine. And then whenever they're sick, it's like clockwork. I'm like breathing treatment, cough assist, medicine, and it was just too much for me. And even still, like, I would do everything in the morning. I would just get, would, they would be in their standing frame and then they would do cough cyst and then they would, you know, take their medicine or whatever. But I never got around to doing exercises at home because I'm like, I just, can't, I cannot do it. ⁓ and like no one would send us like anything to do at home or it like didn't make any sense to me or I would try it and they didn't want to do it with me. ⁓ up until we went to Napa, which is a three week intensive. And at the end they give us each therapist gives us like one to two exercises to do at home. And that like, I was like, okay, I'm going to do these at home. I'm going to actually do these at home and I'm going to, you know, Change our whole routine to where it's not overwhelmed. So, every morning we'll do standing frame and right after standing frame, we do the workout and. ⁓ And they know that, they know that and every, every morning they're like, we doing standing frame and workout today? Or can we get a break? And so I just think staying ahead of things, is the best that I can do for myself. And also like, whenever they're in the standing frame for an hour, I'm like working on the house. I'm doing chores around the house because they're occupied in there for an hour. So I'm gonna go do some stuff that I need to do before I need to sit and do the workout for 30 minutes. So that I don't feel like I didn't get anything done. So it's just, and everyone's schedule is different and routines and the way that they do things, and that's kind of like what... I talk about in House of Harm, it's like finding something that works for you and your family. Because what I do probably doesn't work for, you know, other moms or, you know, moms that have, that are working moms and... I wanted it to fit like everyone. Yeah. And that's where it came in for me because I was like implementing things and coming up with our own system. But then in the back of my mind, I knew that it didn't ⁓ make sense to some people. And I just seeing you saying you say that, was just like, you know what? Nobody understands what we're going through. Nobody understands fully what it's like unless you're in these shoes. So I'm going to continue to do what works for us and just drown out all the noise. Because I think that's easy to get into that thought like, well, if I go home at six from this gathering or I say no to going to this party because we're going to get home at nine, because what they don't see is the whole next day is going to be a complete zoo because we got out of routine. Yeah. And then also the meal plan. That was something I really love in House to Harmony. was like, because that's always, you know, three, four o'clock comes around and you're like, ⁓ what are we going to make for dinner? having just a month of like you telling me what to cook. Especially with my wife, I didn't really do much cooking ⁓ before cancer. so just having that, ⁓ I know exactly what I'm going to cook. When I go to the grocery store on Sunday, I know what I'm going to buy because I already know what's going to be eaten for the rest of the week. And just having that clarity and simple planning, it really relieves a lot of noise in your mind. Yeah, even still that is one of the things that I'm like, do I really have to cook three meals a day every single day and like, dinner forever? Like, this is up to me now. Right. That is always one of the and I'm like, where it's spaghetti is every week because it's easy. Everyone will eat it. My husband's like, I'll like find a new recipe that's easy. And he's like, Are you going to cook anything else? And we'll say no. I'm not. I try new things. It is gross. So tell me about House to Harmony. What does it look like for somebody to check it out? How does it all play out? So whenever I was thinking, because my number one goal is to advocate spread awareness and get people more familiar with accessibility and like things like that. So that was what I was, I was going to do House to Harmony just on that first. But then I was like, how can I make this to where people who might not have kids with unique abilities buy it? but then still contribute and be aware of these families and how can they do things differently and help this world that we're in. So a big thing for me is I cannot relax or function or do anything if my house is a mess or chaotic or any of that. Like, I just can't. ⁓ So I focus on that first. And then it goes into the meals. And then I talk about how we do. ⁓ like Easter egg hunts, how the girls can participate in that with their cousins and, not get left out. The girls loved whenever they, they started going to Sunday school. Well, they would always be at this kitchen and they're in their wheelchair. So they can't really get up to it or really play with it. So I took it into my own hands and we built something that they could. pull up to and it was a kitchen. So it has the sink, the stove, ⁓ oven, and they can use wheelchairs, walkers, or they can sit on the floor and play with it. It all works out. But I'm like people like, toy makers aren't thinking about this. No, right. At all. Or like at parks. I'm like, we have like ⁓ accessible parks around here, but I'm like. I don't know how I would change it, but I'm like, what? I'm confused because like they can go up the ramp. The ramps are shorter, but I'm like, they can go up the ramp and play with the little things. But like, what about swinging and sliding? how? So just making people and again, I and I'm hoping that it like inspires people to who might know, ⁓ well, maybe we could do this or that or like get people's ideas and because I have never I never I've never seen tiny little wheelchairs like that in my life. I didn't think kids were in wheelchairs like growing up. So like seeing these little tiny wheelchairs and the little tiny walkers and all that. like, I've just never seen this before because nobody talks about it. So whenever I made House to Harmony, think it's the last section. I'm like, if you're not going through this, here are some ways that you can advocate and bring awareness to childhood disabilities and, you know, like actually make a change. Yeah. So while also they can also take from like getting everyone needs a routine in my opinion. We didn't have routines. don't know. It's to be a different story. So when people walk away from House to Harmony, what do you how do you hope they feel? I hope they feel inspired and motivated and wanting, I hope that they take away from like the tips I give and on making a routine. I hope that they get something out of it for themselves, whatever their family situation looks like. I hope that they take. take something from it while also feeling inspired to make a difference and inclusion, accessibility and all that. just hope that it inspires them to actually make a change wherever they may be. Yeah, yeah. That's so good. We'll round it off and land the plan and a couple more questions. If a mom or a dad just got a life altering diagnosis, what would you tell them right now? I would tell them that it does not define them or their child. It is just a diagnosis that, you know. And it's going to be okay. It's really heavy and nothing that anyone says to them is going to help. But, you know, soon enough, it's going to be okay. That is still your child and it does not matter the diagnosis. It does not define them and it should not. You can still have a happy life. Yeah, 100%. That's so good. What have your daughters taught you about life that you could have never learned any other way? That anything is possible. If you want to do something, you can do it. They started watching a gymnastics show and they were like, I want to do gymnastics. So immediately I was calling every gymnastics place and I'm like, here's our situation. They want to learn how to do a forward roll. like and most of them were like, well, and I'm like, well, no, but then I had this, you know, I had this one, we started doing private lessons and and I'm also protecting them as well during this. So they wanted to do gymnastics while I'm like, OK, so for dance, they're in with the group of girls because I'm like that. That's fine. But with gymnastics, can't do gymnastics in their walkers or their wheelchairs. So we paid for private lessons so that they weren't seeing all of these other kids doing all this other stuff like right there with them. So we paid for private lessons and it was even great therapy for them, but they loved it. And the coach didn't like hold back. They were like, we want to do the bars. So then she's sitting there helping them do flips on the bars. She's going on the balance beam with them and I get a lot of... hate from it because they don't people are like well whenever they get older like they're not gonna be able to do that and i'm like want to bet like you have no idea but i think that they just if they want to do something they they put their minds to it and it you know they don't let anything hold them back yeah anything is possible that's so good how is ⁓ faith played a role in your journey. It is the foundation of it all. Yeah. I mean, even since they were in the NICU. ⁓ the NICU days. I had a NICU baby. Yeah. Jesus was the center of it. I turned to Him for absolutely everything because anything is possible. The doctors can do everything that they can do. The therapist can do everything that they can do, but at the end of the day, like them walking may not be a part of their story and that's it's okay. And I know that. And when things feel heavy or hard, I just, pray about it. Yeah. So good. So that, keeps me moving. Absolutely. And I'll close with this. Recently I was, Philippians 413 kept coming to my mind. I can do all things to increase strength. And you know, that's like this the most thrown around verse there is, especially for athletes. And then when you look at the real context of it, Paul's talking about being content. And I think it's interesting because, you know, coming from Paul, he had a super adventurous life. was beaten, shipwrecked, all the above. He lived with a ⁓ in his side and he said he learned the secret to being content and it's only through Christ who him strength. I think about life is turning out to be different than I thought it would and same is for you and many other people and the only way to actually be content is not something that you can do but it has to be with God. So cool. All right, how can people find you? Instagram. Yeah, Instagram. I'm on Instagram and TikTok mainly. Anika underscore warly. Same on TikTok. It's just Anika Warly on TikTok. Yes, Instagram and TikTok. All right. And if you're you got to go to her page and you got to find House to Harmony because I know there's Tons of families out there that could use a little bit more system in their life and routine. And real quick, what would you say to the families that try it, but then hit roadblocks? How do they get through them? Just keep trying. Keep trying and do what, take what works for you. And just, you know, some of the stuff that I put in there may not be an option. for people, like that's why it's important to do what is important for you and just make a routine. ⁓ keep trying. mean, I've hit many roadblocks, I'm rearranging things. I'm doing things at different times. So it just, it is trial and error. And just keep, yeah, like you said, keep trying. and give yourself some grace. It's not gonna be perfect. Not every day is gonna look perfect, it's not gonna look the same. But those days that you just crush it, it's like, all right, do the same thing the next day. That is me. I've recently, I will start, I used to be so hard on myself. I'd go to bed and I'd be like, oh my gosh, okay, I did standing frame, but I didn't do their workout. I'm a horrible mom, I didn't check all the boxes. And then recently I'm like, but I did standing for him. I did something, they had a great day, they played hard. You know, they're using their muscles to reach for their toys and play. But there's some days where I'm like, I'm not doing any of it. And we're gonna sit on this couch and we're gonna watch movies all day and that's okay too, because we're still human. Everyone's fed and happy. Right, right. ⁓ so good. Well, you got a powerful story, powerful journey and change of lives. Thank you so much for being on the special podcast. That was a lot of fun. Thank you for listening to this week's episode. We love these conversations and our goal is for all of you parents to be seen and heard in community with one another, inspired and equipped to take on this life. Just remember one thing, if you don't hear anything else, if you don't remember anything from this week's episode, hear this, you are enough. You have what it takes. Thanks again for being here.