Salym Liufau: Finding New Ways to Live with ALS for Her Four Children

In this deeply moving episode, I sit down with Salym Liufau, a 33-year-old mother of four living with ALS, whose grace and honesty have touched thousands online. Salym opens up about adapting to a body that’s changing while holding tight to joy, purpose, and presence. We talk about motherhood in the face of uncertainty, the traditions she’s building for her children, the legacy she hopes to leave behind, and the truths she feels called to share while she still can. This conversation is tender, grounding, and a powerful reminder to live with intention, love boldly, and never postpone what matters most. Salym is also an active member of Her ALS Story, a non-profit organization specifically for women diagnosed with ALS before the age of 35.  Thank you for listening and sharing with a friend. Hugs, Lorri

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Transcript

Brothers Introduce Lori And Mission

Paul Carey 0:08

Hey, I'm Paul.

Christian Carey 0:10

And I'm Christian.

Paul Carey 0:11

Welcome to I'm Dying to Tell You. Inspiration shared by our mom who is dying from ALS.

Christian Carey 0:16

There's no cure for our mom or anyone else with ALS. But right now, she's on a mission to find and share stories of inspiration.

Paul Carey 0:23

Coming to you from Cincinnati, Ohio, we're happy to introduce the one lady we've both loved since the first day we laid eyes on her. The Queen of the Queen City, our mom, your host, Lori.

New Year Pause And Today’s Guest

Meet Salem: Motherhood And ALS

Lorri Carey 0:48

Hi, I'm Lori, your host of I'm Dying to Tell You. Thank you for being here. Hey, it's so good to be back. I took a little break over the holidays. A much needed break just to refocus on taking care of myself, getting back to a routine that has helped me in the past. So I feel really good about going into a new year, being super ready to share some very, very special conversations that I have had and that are gonna bless you all. I know it. And today's conversation is one of them. Today, I'm talking to a young woman, a mother of four children, and someone who is putting it all out there to inspire others, not only about living with ALS, but also about just finding ways to really live, be a part of your family, keep life as normal as possible when you are given a really crappy hand. I'm talking about 33-year-old Salem Lufau. I was introduced to her on social media, I've been following her. I love, love, love her spirit, her personality, and her great big heart to share with the world. And she inspires me so very much. I was just really excited that she agreed to come on the podcast so that I could share her with all of you. So let's go ahead and jump on Zoom with Salem, and you can hear more about her story, her inspiration, and of course, what she is dying to tell you. Okay, let's go. How are you? I'm good. How are you? Good. Good to finally officially meet you, see you. I know, I know. So yeah, well, I'm so, so happy to connect with you. Yeah, for asking me. Yeah, I um I think I first saw you on TikTok. Yeah, yes, I'm like, who is this girl and her spicy chicken nuggets? Yes, yes, yeah. TikTok for a sec, but yeah. Well, tell me, just tell me about. So I found you on TikTok. You um are educating people, entertaining people, your spicy chicken nuggets. Tell me about how you even jumped on TikTok and started sharing.

Social Media, Awareness, And Humor

Salym Liufau 4:12

Well, so I started actually on Instagram, and then you know Brooke, she's always just a huge inspiration. Everybody in the ALS world knows Brooke. Yeah, Brooke, Brooke, she's always just been so encouraging about sharing it on both platforms. So I just started pretty much because she's said to, so she's so good at that.

Lorri Carey 4:34

It's um a unique way to I think educate people and bring people in that aren't a part of the ALS community. I mean, have you seen that?

Salym Liufau 4:47

I agree. No, I have, yes. I feel like I've had quite a bit of people um follow me. Like I actually just had someone just comment on TikTok today that asked what ALS was. So I feel like that's big to bring awareness for ALS.

Lorri Carey 5:03

Yeah, absolutely. And if they are still engaging, you know, even though they can't personally relate to it. And I think when you step back and you look at it, everyone really can relate to you, to Brooke, uh, to me in some ways. Yeah, definitely. Because everyone has something. We're all so different. Yeah. We're all different, but we all are going through something that you know is hard. And so what you're bringing to the party and Brooke is bringing laughter, yeah. You entertainment, education, knowledge is helpful no matter what they have going on. I totally agree. Yeah, yeah. So I don't know how you're doing it because you're young, you have a lot. So are you 33 now?

Salym Liufau 6:06

I am 33, yep.

Lorri Carey 6:07

Okay, yeah, the same age as my baby.

Salym Liufau 6:12

Oh, really? How many kids do you have?

Lorri Carey 6:14

1992. Um, I have two sons, one is 35, and one is 33. Oh, cool. Yeah, yeah. Yeah, so you're you're 33, you have Alice, you have four children under 10, right?

Salym Liufau 6:33

Yeah, well, my oldest just turned 11 last week.

Lorri Carey 6:37

Oh, okay. Yeah, all right, okay, all right. What's that? Four under 11. Yes. It's good though. I'm lucky. Yeah, it's good. You know, everything that you're there to see, I'm sure it is uh a blessing. I understand. Yeah. So tell me how you're doing it all. Like, how are you?

Salym Liufau 7:01

You know, they do say it takes a village, right? And I think with ALS, it truly does take a village, you know, because obviously, you know, like I can't get my kids to sports unless I'm like planning. This kid needs to get to volleyball, this kid needs to get to basketball, this one's at baseball, this one's at a church event, you know. And so it really does. I think like for other people, they don't see like the behind the scenes of what even makes like a family function, you know. I'm super blessed to be by family. I have my husband's family, I have my parents, and I have my sister, and I have my my husband's um brothers here. And so it's all just moving pieces to make us function, you know? Yeah. I mean, before I, you know, I could drop a kid off at volleyball, and my husband could go take this one, and then we could go and grab this one and go take this one this way, but it's a village. I think with ALS, you have to have a village, and it's I'm blessed to have one.

Moving To Texas And Finding Support

Lorri Carey 8:00

Yeah, I mean, it's a luxury for sure. It is being in this ALS community for 21 years, I haven't seen that. Some people don't have a community, and some people had one, and then after they're diagnosed, they leave they don't as much, and it's truly devastating. Yeah, you were in Las Vegas and you're in Texas now, right?

Salym Liufau 8:24

Yeah, so we moved here um because we felt we should. I am and then I got diagnosed about we moved here in October 2022 and got diagnosed in May 2023.

Lorri Carey 8:39

So wow.

Salym Liufau 8:41

Just a short few months. I symptoms started in Vegas, but wow.

Lorri Carey 8:46

So you moved there not knowing you were gonna need that village.

Salym Liufau 8:51

Yeah, we just like I'm well, we're like religious, so we just kind of felt like a pressure from God that we should like be here, and I've never like had those feelings before, but here we are, and it worked.

Lorri Carey 9:05

We're blessed for sure. Wow, that's powerful. I love that, I love that so much. So since you have been very open about sharing the realities of ALS on Instagram and on TikTok, and to my listeners, I will of course put links in the show notes so that you can follow her as well. Yeah, so Salem, can you tell me, you know, how do you decide what to share publicly? Is it something that you know just inspires you? Something that you really want people to know based on an experience that you had. But how do you decide what to put out there?

What To Share Publicly And Why

Salym Liufau 9:52

That's a great question. Um I would say it's more a feeling of what I put out there. I I I know you don't like people don't see everything like behind the scenes, and I keep some stuff private, but for the most part, I try to share what like ALS really does to a family, you know, and to me, you know, the the happy parts, of course, you know, because there is still joy and then um the funny parts, and then there is sadness, of course, that comes with it and grief. Um which that is ALS, you know, like it is all of it, it's not just just sad, you know. I I mean it's devastating, but it also can be beautiful, yeah, yeah.

Lorri Carey 10:37

How are your children doing right now?

Salym Liufau 10:39

They're great, they're amazing. They and I'm a part of a her ALS story, and we always say in there that ALS kids, I'm sure you can relate for sure, are the strongest kids. Like they're so aware of other people, they're so you know, giving, they're so they come with a different type of like love, you know, once like you see your parents struggling. It's they're good, they're great kids, they're doing well. I'm excited to hopefully watch them grow as I keep fighting this.

Lorri Carey 11:15

Yeah, yeah. I see that you were on one of your videos that you were teaching your onus hunt into your hair because your hands right now, you know, are still working.

Kids’ Strength And Everyday Joy

Salym Liufau 11:28

Yes, they are still working. Yeah, yes, it's uh my hands up now. I'm I can still like do things with them, but it's like lifting and stuff. I can't really do much with like making them food. If it's light, you know, you can grab it, but with any weight, I can't really um do. But yeah, with that I've been trying to teach them just little things how to cut a potato was one. I I haven't even posted the video, but you this summer I tried to teach my oldest daughter how to even just cut a potato right, you know, like how to learn to use a knife. Like those are things you would be able to teach kid, you know, at 14 or something, but with ALS, you've got to teach them faster, you know?

Lorri Carey 12:14

Yeah, yeah. Oh I know that when you were first diagnosed, you noticed something was wrong when you were picking up one of your children. And because ALS is so different on everyone, why don't you share how ALS is affecting you physically right now?

Progression, Caregiving, And Bonding

Salym Liufau 12:37

I guess physically where I'm at, my body is at. I my legs don't work. I am I can barely move my toes, and I'm holding on to that movement of my toes for dear life. Um and my voice is still great, my hands still can do things, but like they get too tired to be able to like make all four kids food. So I um physically I need help getting them just even basic thing, food. I can't bathe them anymore. So I guess that's yeah, physically where I'm at with my body. My core is getting weaker. So I know in one of my videos online, um, my eight-year-old was putting me in bed. Um just recently within the last um sorry. Just recently within the last um month, I've declined enough to where like they can no longer help me, which is totally fine. I'm still lucky to be able to, you know, get in and get out through caregiver, you know, help. But there was something special about them being able to help me, and I think it was just a certain kind of bond.

Lorri Carey 13:52

Oh, yeah, I know. And I remember you were talking about that on the video, and you can also see the joy in her eyes, you know, because kids want to help, they do, and they want to be involved, and it gives them this power and allows them to be invested, you know, in this new season of life with you. So, but I'm sure that there are other ways that they're gonna be able to help you along the way, you know. It's gonna be endless.

Salym Liufau 14:29

It's always interesting.

Lorri Carey 14:31

Yeah, and I think it's great that you're doing that. And like I said, over the years I have seen so many families handle ALS differently. I've actually seen parents not tell their children at all what was going on, and it just seems from the outside looking in, it just seems like those families that involve the children, you know, age appropriately, right? They thrive better in this situation. So yeah, that's good to know. Yeah, I say, you know, keep doing what you're doing and thank you, um, find different ways. And I know it has to be absolutely heartbreaking, you know, as a mom and all the things that you do as a mom and that you're responsible for as a mother. Yes, you lose some of those abilities and privileges to do for your children, you know, that really makes you feel like a mom has gotta be really hard. Yeah. I know that you have said that all of those things, you know, making meals and giving baths and the whole bedtime routine and all that, like with four with four children under 11, finsy, finsy, busy, but yes, you know, good.

Salym Liufau 16:05

It is good. I think kids uh at least for me, I'm lucky to have them. They keep my day more joyful. I think uh sitting here alone would be very difficult. And so I feel for the people who uh are sitting alone, you know. So I would I'm blessed to be able to hear the cry, to hear the laugh, to hear the screams, to hear the fights, to hear the joy, you know, from kids.

Teaching Life Skills Early

Lorri Carey 16:31

Yeah. Tell me about some of those joyful moments. Oh man. You probably have them all night long.

Salym Liufau 16:43

I don't seriously just listening to them laugh, you know. I'm simple as I was laying in my bed last night and my I was fake sleeping, you know how all parents do and their kids are little, right? So I was fake sleeping, and my little five-year-old son climbs up and uh he like he like does a little flick on my hands to like see if I'm awake. And then he just uh goes up to my face and he just gives me a kiss. And to me, I'm like, that's just like I'm glad like my body hasn't changed, like my body like hasn't changed the way that like or it's changed, obviously. Sorry, but like the way I look hasn't changed the that the love that they still have for me. And so to me, like that's just such like that's joy. Like that is I know I know you know, like those little moments are just like, oh yes, you know, that's really good.

Lorri Carey 17:42

That's really good. Yeah, kids are great that way. So they are I know adults that shy away from other adults, you know, when they get into a chair or start using a speech device or whatever, because they're not sure and they don't want to do anything wrong.

Salym Liufau 18:01

And kids know, they just have a different type of love that you can get from them and not from somebody older, you know.

Honesty With Kids About ALS

Lorri Carey 18:09

Yeah, yeah. I love that you have talked about, you know, teaching life skills, like you mentioned, that you're already starting to do, and making memories with the family. And um Sarah Bennett from Columbus is doing that. She's amazing. I mean she's unreal. If she hasn't written a book, you know, they need to take all of her information and Jesus because she is queen of um memory making and legacy to her two sons. And yes. Um and I I see you doing that as well, you know. Oh, thank you. So what's gonna be important for them to know from you in the future?

Salym Liufau 18:57

Yeah, that's good. Um I think the word resilience um sits with me, you know. And resilient, you would think that like, oh, you just keep pushing forward, right? But to me, resilience is is messy, you know, it's about how you jump back, you know, from the messy and have that resilience, still pushing forward. Yeah. Just from you know, asking for help, um having failures and then having resilience after that. That's yeah, I think that's where like I hope to teach them that they can, even though life is hard, they can have resilience, it gets messy, but you can still push forward, uh, you know, if you hold on to that. Yeah. Because you're not gonna always push forward, you know, you're not gonna be nobody's pure like pushing forward. I've never seen that happen. You know?

Lorri Carey 19:51

No.

Salym Liufau 19:52

So if you can hold on to resilience even when it gets messy, that's I think that's big. Enjoy. Yeah. Love the word joy. Yeah.

Lorri Carey 20:00

That's great because life isn't easy and No, you're gonna fail. They are gonna fail. And yeah, you just gotta jump back up. Yeah, and that's how they're gonna learn. That's great. Yeah, you think about that, if they really learn that lesson, then you can feel assured that they're gonna do well in life. They agree.

Tools For Talking To Young Children

Salym Liufau 20:24

You know, even when it's hard. And and I would say um sorry, one of my kids is homesick. Well, she got teeth. You're good. Go away. ILS doesn't just hit me. It doesn't just hit you. It doesn't just hit Sarah. It doesn't just hit you know Brooke. I mean, there's so many people. I'm their list could go on and on, all the her ALS people. It hits the kids too. It hits the caregivers. It's just hitting them in a different way that it's hitting us. You know, I think uh we're all involved. And so to stay, you know, with like the toughness, the resilience to keep pushing forward, they're already learning it now. Yeah, for sure. You know, yeah, yeah. They just don't know it because they're so young, but yeah, but they are learning it.

Lorri Carey 21:18

Well, and they're witnessing you all day long, and you know, it doesn't have to be a formal if this happens doing this, they are watching you and they are learning and they are adapting those skills that you're portraying every day. Yeah, seriously. My um oldest son is 35, and he recently told me, you know, we watch, he was talking about him and his brother, he's like, you know, we watch you and dad all the time. We watched you guys as a couple, we watched you in your marriage, and they're neither of them are marrying yet. You know, we watched you and we're learning. I'm like, oh no. Oh, oh, okay. Yeah, do better than me, please. I'm like, oh, maybe we're letting me know. We better shape up. I'm like, oh man, that's pressure.

Salym Liufau 22:24

It is, but you know, I I think it sounds like he's learning so many positives from you.

Lorri Carey 22:30

Um, you know what it's really struck me that at 35 he's telling me we watch you, we're watching and we're learning. And um, so yeah. I guess it doesn't stop.

Salym Liufau 22:48

Yes, you know, it starts from young age, you know, and it's funny you say that because I watch like my husband's parents and my parents, and it's true, it's we he's true, it's 100% true what he said.

Identity, Gratitude, And Delegation

Lorri Carey 23:00

Yeah. So one of the most common questions that I see in all of the ALS forums that I'm on on Facebook and everything, is how do you tell young children about what's going on with the ALS? Yeah. Do you have any tips or tricks that you would share to someone who is just getting into that challenge?

If Energy Were Unlimited

Salym Liufau 23:34

Yeah, I I think it depends, of course, on the your kids' age, right? What's age appropriate? I'm yeah. So obviously my kids are younger, but if you had somebody's, you know, kids that were maybe your kids' age, it would be a different talk. I am but for for us, I'm my twins are five, so they don't they don't understand, you know. They they don't comprehend, they just think I should still be able to like do their hair and put it in a ponytail, which I can't, you know. Yeah, they just like, oh my hands are just getting weaker, you know, my body will get weaker. I am you know, kids kid appropriate for their age, whether my eight and um now 11-year-old, they know they've asked me the question, um like, are you going to die? My answer was yes, right? Um, because we all are, you know, like it doesn't matter what you are. Am I gonna go faster? You know, I don't know. You know, I see ALS people that have been living for 10 years, and I hope I'm one of them. You know, I'm fighting to be one of them. But to be honest, we are kind of, I guess, bless-ish with another uh I have a niece that um she has a different neurodegenerative disease, and so she is wheelchair bound, and she is 12 now. Um, and I just kind of told them that like, hey, I'll be like her name's Emmy. I'll be like Emmy, and you guys will be able to do dress up with me. You guys, I'll be your personal doll. You get to do my makeup, you get to think my nails, you know, and I think that's kind of where they're at for Kid Appropriate. I've always asked them once a month, hey, do you have any questions for mom of where mom is at? You know, do you have any questions of you know what's going on with my body, what will happen with me? That's good. And so I do do that once a month with my older two. Yeah. Younger two, they just are just okay, mom, you know. Yeah. All right, now what's next? What do we do next? Come get me some ice cream, mom, you know. So that's one thing I guess I do with my kids is or my older two, is ask them, you have any questions for me? I I want them to be able to ask me before they hear something at school and you know, kind of keep up on their age appropriate.

Lorri Carey 25:57

Yeah, you know, and I think revisiting that is good because if you say, Hey, let me know if you have any questions, they're gonna either forget, they're not gonna feel comfortable bringing it up. And so you coming and finding them, you know, yeah, to share how they're feeling, or yeah.

Salym Liufau 26:17

Or I'll just tell them a little bit, even if they don't have questions, I just tell them a little bit about where my body's at. You know, because if you look at me, like you would think, yeah, like you know, you look at someone, you think, oh yeah, their arms work, you know, like she's feeding herself still. She, you know, can put on her makeup, but with b behind the scenes, you don't see that I'm holding my other hand up just to put on my mascara, you know, like right. So I'm I always try to keep them like, hey, mom can keep doing this, but you know, it's getting hard for mom to do that, you know. Yeah, so even if I don't have questions, I try to keep them at where like my body is physically.

Fighting For Moments And Legacy

Turtles, Voice Notes, And Keepsakes

Lorri Carey 26:55

Yeah, and you're honest. I like that you're just you're honest. Yeah, I think that that's big for us, yeah. Even if it's hard, yes. Um, and I think you have to be because like you were saying, kids are smart, they are they know, they so you you just have to again age appropriate, but you have to be honest. I totally agree. Are you familiar with the film Lukey and the Lights? I have heard of it, I have not watched it yet. I need to oh, okay, yeah, you should watch that just for the little ones. I'm thinking my uh great niece is six, but when she was five, I let her watch that film, and it was amazing. I actually videotaped it and I'll send it to you later. Yes, because she gets off, and then it they on the website they also have like um coloring material and stuff like that. She was coloring a page of Luki, it's about a robot that has ALS, and it was created by uh a gentleman in the Netherlands that had ALS, and um he needed a way to tell his children about the disease, and my great-niece said, um, what about his chair? How come it had feet on it? And I was like, feet on it? She said, Yeah, it had feet on it. And I'm like, Oh, she's talking about the wheelchair because I, if I'm going on a long walk or a great distance, I will use a walker. So she has seen me with a walker, and she was like, Well, why does his have feet? You know, and it was great because a lot of times she was like, Do this, do that, pick me up. I'm like, I can't, I can't, why not? You know, now I have a reference point. Well, remember, Luki, kind of thing. It's animated, so it's really quick, like 11 minutes. Oh, I'll have to yeah, I'll have to look it up, watch it. Yeah, yeah. So well, you've shared so much about you know, being a mom, having ALS, and what you've been doing. Tell me a little bit about you before ALS. Yes. So what what is something about you, about your personality that ALS has not touched?

Salym Liufau 29:40

Oh, that's good. Oh man. It hasn't touched, you know. I hope I hope my personality, I hope I'm still as funny as I once was. I hope I'm funnier, you know?

Lorri Carey 29:52

Yeah, yeah, you have some really good material now.

Salym Liufau 29:56

I'm dang, that's good. I'm before ALS, I thought I could do it all. I could do it all, you know. You just think, oh, I can get this kid here, I can, I can work, I can, you know, go get the groceries, I can work out, like all the things that you I know, me personally, 100% took for granted. Like ALS makes you grateful for super small things. Um so I think before, I don't even know if I can even relate to before because I know ALS has changed me so much now. I am and I would even say, like, oh, I would like it, you know, before like I loved my kids, but I feel like ALS amplified it to like like you know, if you're in a NASCAR, you're going from zero to literally like 200, you know. I think it almost amplifies all those feelings, which I'm grateful for, to be honest, you know, because I think you miss out on little moments.

What People Miss About ALS Families

Lorri Carey 31:04

Yeah, yeah. Well, I would say that you still have that great spirit and that drive, and it seems like you're still able to do all the things, even if you're not doing them physically. Yeah, but I bet you're managing and you're scheduling and you're asking for help and you're delegating.

Salym Liufau 31:27

And isn't that just the hard yes, delegating, but like delegating and asking for help for me was so hard. It still is like I'm like, oh, I wish I could just do it myself. You know, you go through those days where you're like, I could just if I could just walk for one day, I could really just get so much done. You know, like I could really clean up this down so well, you know, staring at me right now.

Lorri Carey 31:54

Oh, then you're like something you really hate engine do oh no, I can tackle that and I can get that and done. Giving 24 hours, yeah. Give me 24 hours. I'm staying up for the whole 24 hours, too. Yeah, oh yeah, I'm loving it.

Salym Liufau 32:11

Oh yeah, I think yeah, before I I think I'm a total different, not different person, but a different awareness type of person, you know. Yeah, deep awareness for other things.

Lorri Carey 32:26

Sure, yeah. What would you mean putting all of your energy into right now if we didn't have a list? All of your all of that physical energy.

Salym Liufau 32:40

100% my kids, yeah, my kids and my husband, without a doubt. I yeah I wish I could be a PTO mom and you know uh go to all their things, you know, just simple things that you just missing out on.

Lorri Carey 32:58

Yeah.

Holidays, Traditions, And Presence

Salym Liufau 32:59

Take them to the park. Gosh, I I wish I could just drive my kids to the park. Just little things. Yeah. That's where all my energy would go. I would even maybe quit work just have have uh well, I did, I'm not working anymore, but yeah, uh I would put it 100% to my family.

Lorri Carey 33:20

Yeah. What were you doing for work?

Salym Liufau 33:23

I used to do ILAFs extensions, so I did that for nine years.

Lorri Carey 33:27

Oh my gosh, wow, yeah, it was fun. Oh, okay.

Salym Liufau 33:34

Very cool. Yeah. What uh what about what would you do? I feel like I need to know what would you do?

Lorri Carey 33:40

I I know you're asking me questions, but like wait a minute, wait a minute now.

Salym Liufau 33:45

Yeah, and because you're in a different stage of life I'm in, you know.

Lorri Carey 33:50

I know, I know. I I was born in traveling and hiking and all those things that I didn't do when I was younger and 100% able because I was working, yeah, you know, and raising the kids and working and working and working and working and working. Yes. Um and I we never really traveled. Now we are, you know, but it it's very uh thoughtful, you know, like where we're going, what can I do? What can she do? You know, am I gonna get left out?

Salym Liufau 34:22

How many steps can I get up? How many yes, yeah.

Lorri Carey 34:25

Am I gonna get left out? Am I, you know, and and I'm really good about like, hey, if there's something you guys want to do, go. I'll be okay. Yeah.

Salym Liufau 34:35

Um I feel like you can just making sure you're bringing the right equipment, you know what I mean? Like, do I need a little wheelchair or do I need my walker? You know, like do I need my pain? I feel like there's two different things.

Finding Community After Diagnosis

Lorri Carey 34:47

Yeah, but without ELS, there's no limitations. Not no limitations, because I am 60, but a lot less limitations. And so it wouldn't be great to be able just to go wherever. Like, I really want to go to Greece. And every time I say that, my husband's like, Well, there's so many stems. You should do it. So many steps.

Salym Liufau 35:12

I'm like, the stems, the stems. No, hey, there's a girl that just in the Harella story. I don't know if you know Desi, but she just went to Greece.

Lorri Carey 35:22

Oh, she did it. Oh, Desi, I'm coming for you. Yeah. Yeah. So yeah. That would be so fun. What is something like a story or a lesson that you think your children will not fully understand until they are grown adults? Yeah, that's good.

What She’s Dying To Tell You

Salym Liufau 35:56

I'm you know, I feel like obviously ALS is in our family, and I think right now they fully won't understand what it's like to fight for everything. You know, I feel like with ALS, you're fighting for that last breath. You're fighting for that last movement, you're fighting for that last hug that you can wrap your kids around, you know, your arms around, sorry, your kids. You're fighting for every little independence thing. Um, or just even, you know, taking my kids somewhere, you know. That you know, I hope that they don't find don't know what that is now, obviously. But when they get older, I hope they do understand that. How much that I fought for them and that um they understand that like I will hopefully make it to every volleyball game, I will make it to every baseball game, and that I'm still fighting for you, even though it looks different and my mobility has lost, you know. Yeah, yeah. So I guess the love that I hope that they know I had for them.

Lorri Carey 37:05

Yeah. Are you doing anything legacy-wise, like writing them internal, writing doing videos directly to them or anything like that to try to convey those messages?

Host Reflections And Gratitude

Salym Liufau 37:23

So I haven't done as much as Sarah because she's killing it, but I I crochet my hands still work enough to crochet. I have crocheted them. I haven't posted it yet because I haven't finished just one turtle voice thinking thing. Um I made them giant crocheted turtle uh turtles. Um they're my favorite animal. Um and then I stuck, I recorded my voice and I stuck it in uh there for them. And so every time they push it, I made that animal and it's my voice telling them how much I I love them. So I have done that for all of them. Um and then I just kind of keep notes on my phone right now about like what brought me joy about them that day, you know, like you said this, and I just loved the way you did that, you know. Almost like a journal from me, but about them, how I loved what they did that day. So that's all I I guess I would say I am doing right now. I need to get better and get all those wedding things done and you know, graduate high school and birthdays. Um, but right now those are the things I have done. And then we have like uh jewelry for all my girls. Oh so we have little have a heart necklace. I don't know if you can see it right here, but it's just generation jewelry. I just bought it because I want them to be like each to have one to know that I love them.

Lorri Carey 38:57

Oh, that's great.

Salym Liufau 38:58

I love that.

Lorri Carey 39:00

Oh yeah, yeah. Well, I feel in my heart that you're you're gonna be here a long time, you know, and so that's why all of it isn't waiting on you to get it all done right now. Because you need plenty of time. I hope so. Plenty of time with your children for sure. Thank you. Yeah. Is there something that you want other people to know about young families living with ALS that they don't talk about enough and they might not know?

Salym Liufau 39:35

I think behind the scenes you don't see how much ALS does affect children. You know, I'm every so often I'll get a kid that says, Mom, I just wish you could just hurry and take me here. You know. I I guess that alone, I guess just being grateful for a moving body, um, being able to do things that for my kids. They have to wait patience, you know. They always have kids, ALS kids, young kids, I guess, that can't drive themselves, they have to find patience. Um because it's always like, okay, we gotta get someone to make you food, or I gotta get someone to take you here. Okay, hold on. I gotta get someone to bathe you, you know. Yeah. Yeah. I think when you're in the thick of little kids, you just do. You just go, you know, you're in you're in kind of in go mode. Yeah. So I don't know about if I know anything except we're just enjoying, enjoy kids, you know. Uh yeah. Even when it's hard, it's it's hard. I mean, we all get through it, unfortunately. Uh, you know, but again, um we're grateful to be able to get through it, you know?

Lorri Carey 40:51

Yeah. Let me ask you, and I'm not sure when this is gonna come out. Can we talk just real quick about the holidays? Yes, I love yeah. So do you approach the holidays differently? Are you, you know, kind of like what are you thinking with the children because, you know, of that busy, busy time, and you know, it's always such a great, you know, a big deal to kids, like anything different that you can do for the holidays now.

Salym Liufau 41:30

I guess my goal is to try to keep things as normal as possible because they're not gonna be normal, right? Um yeah, yeah, but uh we haven't changed much besides, of course, me not getting on the floor wrapping their presents. Um doing all the things. I guess shopping-wise, all the things fine now, yeah. I mean, nothing changes really for our holidays, which I'm super blessed. Um I guess comes like a little bit of the heartache, right? Is this gonna be, you know, my last or ALS life? You always kind of wonder, is this gonna be my last? And you kind of always hope it's not, you're right. Um so I think I take more time to sit back and really enjoy those smiles and giggles. I'm none of our traditions have changed. I I love our our traditions, I think every person should do them. I so like the Grinch movie, we um have roast beast and we watch the Grinch movie. So it's roast beef, but we have we call it roast beast. Um home alone, we eat pizza because in the movie they eat pizza. Oh, I like that with the elf, spaghetti, and then with Polar Express, we have hot cocoa night. So those are things that I just like truly love, like it's just so fun.

Lorri Carey 43:02

Um, those are good. Yeah, you should do them. I know, you know, my mind's working over here. Yeah. That's great. Yes, um, you have built such a great community online on TikTok, Instagram for your videos. For someone that is newly diagnosed, who is afraid to reach out, get involved. Yes, you know, what do you have to say to them?

Salym Liufau 43:36

Well, I remember when I first got diagnosed, I'm actually I went to high school. His name's Joey. I don't know if you know Joey. I'm but we went to high school together, we graduated together.

Lorri Carey 43:48

Oh, Joey um Morello from Las Vegas. Yes. What? You went to school together? So we graduated high school together. Oh my. Yeah.

Salym Liufau 44:02

Wow. We were like acquaintances then, you know, we knew we kind of ran with the same group, but didn't like always hang out. But um, yeah, we graduated high school together. So I guess I I saw him and what he was going through. He would post uh quite a bit at the time on Instagram. So when I got diagnosed, I reached out to him, but just through like in his like DMs, you know, like a private message. Um I I seriously think if you could, even if you're so nervous to like slide into my DMs, please do, you know. Um I think I would love to have a friend. And I was blessed to have Joey there when I needed him, I feel like the most. You know, it's scary. Yeah, but I think once you send that, just hey, can you help me out? I just got diagnosed text or message, like we're gonna be there to help you, you know.

Lorri Carey 44:56

Yeah, uh yeah, I love that. And I would say the same. I get connected with a lot of people here. Yes, that locally when they're first diagnosed, everyone knows that feeling of getting that news and then thinking now what? And so much has changed for me, you know, it's been 21 years. There is so much right now, so many resources out there. So it's incredible. So it's like, you know, take advantage of it, and you don't have to get connected to a big community if that's not your vibe. Yeah. But like for you, her ALS story is where it's at, and I love you guys' community.

Salym Liufau 45:49

Oh, I am so blessed to be connected. I love those girls.

Lorri Carey 45:53

Yeah, yeah. But it doesn't even have to be, you know, a big big group, it can just be connecting with one other person that can help guide you, right? Yes, let us be your friend. Yeah, I love that. Thank you so much for chatting with me today. I'm gonna ask you one more question. Salem, what are you dying to tell us?

Salym Liufau 46:21

I'm dying to tell you that you don't need to move mountains to live life fully, to um enjoy and appreciate the ground you're actually in and stepping on right now. Yeah, that's right. That's good. The little moments, enjoy those little moments. I know you can still keep pushing forward, but you don't need to move mountains. Yeah, you can live where you're at and appreciate the things that once brought you.

Lorri Carey 46:53

Joy. I love that. Yeah, take the pressure away. Yeah, beautiful message and absolutely perfect way to wrap up our conversation. So, thank you so much, Han. So fun getting to know you more.

Salym Liufau 47:11

Yes, so nice to meet you.

Website And Subscribe Reminder

Lorri Carey 47:17

Thank you again, Salem, and just continue to be such a bright light in this world. You probably have no idea how many people you are touching and helping and inspiring along the way. And thank you all for being here, for coming back and listening in. You have no idea what this podcast community means to me. I am thinking about next month, February 2026, where I will be hitting my 22 year milestone living with ALS, and as I quickly reflect back, all of the extra blessings that have come my way during all of this extra bonus time, it's just so overwhelming. I cannot even put it into words what it means to me, how it has lifted me and shaped me, and just thank you for being here embracing this special community to find the light when things are really, really hard. So the podcast has grown over the years because of you. So if you want to take a few minutes and rate and review this podcast on Apple or Spotify, wherever you listen, it really does help people who are searching and want to know, is it worth a listen? I of course welcome everyone into the community and really appreciate you all and your help spreading the word. I can't wait to share more with you this year. Until next time, know you are loved and not alone. Thanks for listening.

Christian Carey 49:43

Thank you for listening to our mom. Make sure to visit her website at I'm dying to tell you podcast.com, where you'll find photos and show notes about this episode. If you like the show, please subscribe to the podcast and share it with a friend. Thank you.