Elizabeth Lounsbery on The Mompreneur Model with Dori DeCarlo

0:07 She is sure, she is true, she is straw is straw, She is true, is true, she is praise, pray, she is she is you. Welcome to today's Word of Mom Radio. Here on the Word of Mom Media Network. I'm your host, Dori Di Carlo, and you know we are here, show after show, week after week, just breaking those myths that moentpreneurs and business women, especially those of us building our businesses from home, that we're just dabbling in between bake sales and getting our nails done. We're not. We are smart, we are savvy, and we are sharing the wisdom of women in business and in life. And today I am bringing in somebody who is near and dear to my part and has a message that we need to be sharing. Liz Loundsbury is a mom on a mission. As an active duty military spouse and mother of three, Liz navigates the unique challenges of military life while fiercely advocating for her daughter, Islah, who lives with multiple rare diseases and disabilities. From fighting for accessible health care to ensuring Elah's voice is heard in a world that often overlooks medically complex children, Liz's advocacy is rooted in love and a deep belief that every child deserves a joyful, dignified life. Liz is passionate about bringing awareness to the realities of famili's face within

1:39 the rare disease and disability communities, highlighting the gaps in care while celebrating the everyday victories that matter most. She also understands the quiet strength it takes to hold a family together while facing deployments, moves, and the uncertainties of military life. When she's not navigating medical appointments, therapies are IEP meetings, you can finally soaking up the chaos and sweetness of everyday moments with her children, scrolling with a coffee in hand, or finding small pockets of rest for reading. Really, Liz's story is one of resilience, humor, and the relentless pursuit of a world where every child, regardless of ability or diagnosis, can thrive. And again, you know, Liz is somebody I know on a personal level, and her husband is one of my bestie's son who I've known since he was five, and her little girl, Alah is the most amazing, little fiery redhead she will ever see. So with all of this being said Liz, Welcome to Word of Mom Radio.

2:49 Thank you, thank you for having me. I am honored to have you. I'm proud that you are doing the advocacy work that you are doing. And I really love people to understand that with everything going on right now, with the big beautiful Bill and the things that have been cut on medical services and needs, especially for our special needs community, that even a military spouse is not above what has been cut. So I would love for you to just kind of take us on your journey that she be a life in Ila's story and what it looks like for you.

3:32 Sure, she and my oldest son are fertility kids. We had multiple tribes of getting pregnant and it never worked. So we went through the fertility route, which was a pastile to begin with, because insurance doesn't really cover that either because they don't really see and fertility as a disease either. So that was the start of our uphail battle. And then you know, we got pregnant with Ila, and up until about thirty two weeks, everything was smooth sailing, everything looked great. She was measuring small, but we didn't really think anything of it because my side of the family is small. I mean, my husband is not. He's six feet and all of his siblings are tall. But I was like, well, you know, my nieces and nephews are tiny. We went in for a regular anatomy check and they scanned from her brain to her spine multiple times, and it was in that moment that I was like, Okay, well something's going on. So at thirty two weeks she was diagnosed with ventricomegalie and from that moment on it was just on the fast lane. Thirty six weeks, I had to get an MRI done on her to make sure that she didn't have a stroke in utero. Thankfully it did not. She did not, She just had enlarged ventricles on both sides. She was induced at thirty nine weeks, but she came out as measuring as a baby. That was thirty five weeks. So we spent two and a

5:04 half weeks in the NICU. She was on a ventilator, she was on a breathing machine. She had to go home with a heart monitor because while one of the walls in her heart chambers hadn't closed fully yet. Because she was so small, she only weighed just at five pounds. So from that moment on we entered the medically complex world and we were not expecting any of that when we had our second child, and it was from that moment on we got testing had She met with three geneticists, and each time it would come back as inconclusive. It wasn't until her third birthday that we got the notice that something had popped on her genetics screening. At that moment, she was diagnosed with van Maldegrin, which is so rare that it is made maybe like one in twenty kids in the entire world. And then she was also diagnosed with Brock syndrome, which is also very rare, and she has extremely fragile bones, so any small ball could shatter her bone. She's had five surgeries in her four years of life. On her right leg, she has cerebral paldy.

6:25 On top of all of that, she is hard of hearing on her right side. She is somewhat wheelchair bound. She uses the wheelchair as her main mode of transportation, but when she's out and about she is scooting and crawling like nobody's business. And then right before she started preschool, she got an autism diagnosis as well. So we have been head first and everything. I remember the video when Aila got her wheelchair. Yes, I's found out that you know what, this is something that she's gonna need. And she took off after her two brothers like the fire little redhead.

7:05 She is. Video and show of her after surgeries and there she was on her crutches trying to catch them. She is an amazing little girl. Yeah, she does not. It's always so funny because every time she has her surgery, you know, they give us the letter rest and her orthopedic is like she's never she's not gonna wrap. We just have to realize that we have to put her in a cast because if we don't put her in a cast, she's just gonna break another bone. So she it does not slow her down at all. I wish sometimes I wish it did because it's exhausting. Try to like make sure that she's not jumping on the trampoline with a broken leg. I'm like, can we tame it a little bit, Let's take a break.

7:51 But if you were just to look at a video of her and not know and just see her playing, you would never know that she's had five surgeries. You would never know that she has been developmentally delayed her entire life. You just wouldn't. She doesn't really let it defind her, and neither do her brothers. Like they know she's KOOKI they know that she's kookie, but they don't let her get away with anything, like if she wants to wrestle with us, okay, we're gonna wrestle back, Like you don't get to just you know, throw your hands and then hide them when it's time to get in there. So she is just very full of spirits, and it took us a long time to be okay with her being in a wheelchair.

8:33 Only. I think it was more hard on Mike and I, my husband and I, than it was on her because we had all of these visions of like what our little girl would do. Oh, she's gonna join the dance team, she's gonna do gymnastics, and then to just meet a brick wall and be like, no, she's actually gonna be in a wheelchair. It was really hard for us. I probably more me I will be one hundred percent honest than Mike. But the moment that we put her in that wheelchair, she lit up because she didn't have to rely on me carry her. It lifted like a huge burden off of us that Okay, this is what she needs and it may not be forever. She may you know, we're never going to say she can't ever walk and that's our end goal, Like we would love for her to, you know, take a few independent steps. But I don't feel as guilty of her being in a wheelchair that I did when they first told us that's the route that we needed to go.

9:28 You know, you're using the word guilty. I'm going to say, I have so much. I know it's and you know what, you have nothing to be guilty about. I know, but it is an amazing thing. The mom guilty. Yes, it's very marry child. That's why everything going on right now with a Secretary of Health that doesn't know what the hell he's talking about, and now turning around about Thailand all why because I know President couldn't figure out how to say. To even say it. Oh god, let's. Just go with Meanwhile, Yeah, let's face it. Tailan All is what they give you when they're not going to give you anything exactly. Tilan Al is the bare minimum exactly they gave me when I broke my wrists, Like, what is that going to.

10:13 Do for me, Thank you very much. Do I stick those in my ears so I don't hear what stream exactly? You know, this is the really tough part of trying to advocate in a world right now that is not hearing anything but their own voices. Yes, the guy comes out and says, well, you know, there really isn't any research that backed up what I said, but it's just what I think. Tell me what you. See exactly exactly. And it's so this is where I have to put my mom hat with my kids, but I also have to teach my sons too. Your voice is not any better just because you're a boy than it is mine, or your sisters, or your dad's better than me. It boils down in my feelings perspective that it's not really they just don't really care about women's bodies, health whatever. The one thing that women can take safely during pregnancy is tilan all. And now you're telling us don't do what you're gonna harm your child. And I, you know, I hate to say it, but I didn't take Tyler all when I was pregnant with Ila because I already had so much guilt with her. Oh my gosh, what could I have done differently to not make her have all of these inuteral issues. So I didn't even take title on all, and she is as autistic as they come. And then my other two boys, Yeah, I took title and all because I was like, well, shoo, I'm gonna take it. I don't feel good is that, especially with nax. I already had two kids and I was older. I was like, I'm gonna take the title and I'll go to sleep. And he's as neurotypical as

11:43 they come for a three year old boy. So and my husband said the same thing. He's like, there's no studies to say, like genetics don't matter to these people because autism is just like any other genetic It is inherited. How somehow the genes got mixed up. And I always tease my husband look in the mirror, and he's like, you're right. I am again that mom guilt stuff. Now we carry them, we put on ourselves. Meanwhile, here you are advocating at the top of your lungs. What is that advocation for? ISLA taught you not only about yourself and being a mom, but the system that we're trapped in right now.

12:24 It has taught me that I am much stronger than I have ever given myself credit for. I always thought like, oh, I'll always say something if I need to. But it wasn't until I had children. Even Decklan, you know, he had a penat allergy, so I taught him, like, you have to advocate for yourself because I'm not always going to be there to like tell people you have a pena allergy. But it wasn't until this I had Isla and this election cycle that I was like, I need my voice to be heard because I cannot let the system fail her. I can't fail her. And so I really started like putting myself out there. I was posting on Facebook all the time, to the point where I have lost so many friends on Facebook because I probably annoyed them because I was just I cannot let this go.

13:19 You may have never met a child like my daughter, but there are children like her in the world, and there are going to be thousands more like her after her, And if I don't say anything, then I am doing a huge disservice to her and all of the families behind me, because they may not have that inner strength to be like, Okay, I need to do this because a lot of the time, like we talked about, you have that mom guilt, so a lot of the time you hold that in and you don't want to tell anyone that you're feeling this kind of way and that you need to But that's when you need to speak up the most, because the louder you are, the more people will start to hear you. When we moved here, we had some issues with the school and I was like, no, I'm not gonna just sit here and let you tell me what you're gonna give my daughter. I'm going to tell you what she needs, and you're gonna find a way to make it work. And I told I told the school. I was like, I will always be kind to you. I will always be kind, but I'm not always going to be nice because at the end of the day, your feelings do not outweigh my child needs.

14:30 They just don't. So we can either work together and find a smooth pass or I can cite you the whole way. And I will gladly do that. And it's like a running joke because my brother works at the school and he was like, well, they definitely know who you are now, and I'm like, good, because I need I need them to know like I will always go out of my way to be kind to people. I will always show kindness, but I will not always be nice when it comes to my children, especially Aila, because the world is now always nice to her. You know what I'm serious. I want you to think of what Liz is saying. We're going to take a quick break, say thank you to our supporters, and we'll be back here in just a moment on Word of Mom Radio. She is brave, she is bold, she is you, and we want to tell your story. Are you ready to share your journey with us on Word of Mom Radio?

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16:10 We need your help. Donations are critical in order for us to continue our work. We also need volunteers to help with research and development. Please visit Unsilenced Voices dot org for more information. And we're back here on Word of Mom Radio. We're talking with Liz Lounsbury and I have to tell you know again I said in the intro. You know, I know Liz's husband since he was a child, and we Mike and Liz went to school together up in del High and I remember meeting you then at a different point. And when I tell you Liz used to be a very quieted person, and she was a very very quiet, timid girl. And to see her, I don't care if you lost friends, and if you lost friends, they were never your friends to begin Yes, because with every post I saw, I was so ridiculously proud of you. I was so amazed at your voice, at the voice that you have found within yourself to advocate for Isla and your kids and for kids like her. MZ. It is remarkable what you have done and how you have been working so hard to share with us. Would you want people to understand about not only raising a child with a disability or disabilities, but coupling in with rare diseases that people don't even never even heard of it.

17:39 Yeah, I think that's the most challenging part is because there are so little studies for her illnesses and her diseases. So before we moved, she had just completed her fifth surgery on her leg and like her bones were opaque and we could not there was nothing we could do, Like her GI was giving her calcium boost, like we were doing everything in our power that we could, but there was nothing was working. And her endocrinologists was like, well, we can start a bone infusion. But the issue is is that we've never had someone ELA's age complete it.

18:20 It's usually done when they're ten, eleven, twelve, when they start noticing when they're playing sports is really when it starts. And her orthopedics said the same thing when she had her first surgery, We've never done this surgery on someone so little, because typically these breaks don't happen when they're three, they happen when they're sport's playing. So we've had to, you know, outweigh the pros and cons of each treatment study, like do we want to do this, and most of the time we say yes. We are a family that will never say no to an opportunity that given to help enhance our children's lives. So for the most part, we have always said yes, and we've made it work somehow.

19:08 Hence why I'm still in New York and my husband is down in Georgia. We knew that going down south with everything that was going on, would not be the right choice for our family, especially with the bone infusions starting, So you know, we had to make that far choice of living separately, which has never I wouldn't recommend it, but it is what it is. As we always say in our family, like we have to do what we have to do. Another issue that arose to is that she was in a research group. She was slated to start a research group, signed all of the paperwork everything. January comes around President Trump inaugurated February, we get a notice that the research has been cut. So her geneticis was like, you know, I can still put her on the list, but the funding is not there and we don't know when we'll get the funding back. But if you would like to stay on the list. I can gladly do that. So we are on a waiting list for a research group for kids like Isla that have multiple genetic disorders that keep manifesting into other disorders. So I can't even say that I'm hopeful in the next four years it'll happen, but I'm hopeful that in the future it will happen. Maybe the next president will realize that the children literally are the future and if we can help save other kids from going through any of the issues that my daughter has gone through, like I will gladly go through every hope to get that.

20:36 It's so sad for me. When I was sixteen, I was at my Field Children's Hospital. I was volunteering there and it actually worked the second Special Olympics there ever was. And now it's on TV, it's on ESPN. Yeah it is, you know, world recognized because the world at one point can't we realized that no child and it means no dial yes should be left behind. And now we are dealing with people. That don't care. And yeah, it's not even just yes. Any person was a disability anything, They're considered a burden now.

21:18 And I will staying until my dying rest my daughters has never been a burden to us. Ever. She could have every illness, none of the I have, All of my kids could have some kind of issue, and they would I would never consider them a burden. And so it's hurtful to say here people dismiss people with disabilities because they can't contribute. Well, what is contributing? What is contributing, Because as far as I can see, she's contributing to her brother's joy, my joy, her dad's joy, her teachers love her, So she is contributing. Sure, she may never had a job that she can by herself, but she is contributing, and she does deserve dignity.

22:05 You know, the thought of people with disabilities not contributing. To Helen Keller write exactly, it's Steve Jobs. You know, most of NASA yes are on the autism spectrum. People hear the word autism and they immediately think of nonverbal non conny and they do not realize the range of that spectrum and how some people are off the charts brilliant but still have that autism, diabetes. And again it is the stigma of not being perfect. I'm doing fingerpas in the air because there is no such thing as perfection exactly. It's like there's a thing that's normal, is a setting on a dryer. Yes, and being neurotypical as opposed to neurodivergent, one would think as we get into the you know, we're twenty five years into the twenty first century, that awareness would grow as opposed to being limited.

23:02 So yeah, that's why your advocacy, the work that I see you doing, the fact that you know, at first you started just doing this a place to vent and he realized that, you know what, you actually have a voice, and a really really important voice to be heard. It really is. So we're gonna have to kind of wrap this up. But what are you looking when you look at Eli's future? What world do you want tying our kids to grow up in? I have grandkids growing up in this world. Yes, I would love for her to grow up in a world where she feels comfortable being herself. She is fully herself at home, and her brothers love and adore her, and I would love for other people to look at her the way that we look at her. We don't look at her as a girl in a wheelchair. We don't look at her as a girl with multiple disorders.

23:59 We look at her as this kooky, little silly girl that just wants to make people laugh. And I want a world where people aren't ashamed to be themselves and to not be afraid that they're going to be like pushed in the corner because they don't sink the same way as everyone else, or they don't look the same way as everyone else, or they don't act the same way as everyone else. Because that is what makes the United States the United States. We're not a you know, institution. We are a bundle of people. And I just wish that everyone looked at children like my daughter as a person instead of how much they're costing taxpayers.

24:45 Oh god, that just was a knife in my heart. That just makes me oh yeah, you know, sadly, so many people until it happens to them. Mm hmm. I just don't really think. They don't know, they don't care, they. Don't they don't care. It's you know, it gets passed by, and no one deserves to be passed by. No one deserves to be stepped over. And if we're not out there advocating for our children, they're all out children. No one will. Giving birth does not a mother mate, and just because that child is not your child. Yes they are, Yeah, they are. Yes. I have said from the jump to all of the moms that didn't vote, with their children's interests at heart, I've always said, like, I will never be the person to say I told you so. I will always come in and say, okay, well, then let's start doing the work now, because I am of the belief when you know better, you do better. And maybe they didn't know, you know, maybe they didn't know better. So my hope and my goal is to make sure that when they do know better, that they can do better and pass that on to parents and families behind them.

26:03 Well, I'm going to say, you know, because we talked about this before we started, you know, I can't fault somebody for their vote. My disappointment and my anger goes to the people that don't vote. So yeah, you out there that have never voted because you don't think it matters, It freaking matters. Yeah, it matters, get off your butt, because those who don't vote are usually the ones who yell the loudest. Yes without how yes. All of their all of these benefits being cut. And I saw a post from nobody in Magga is complaining, Well, they are now. Yes, and they're probably not yes, you know, and they're not complaining because they're afraid that they're going to be chastised for needing those supports. And it's because we've been Yeah, we've become a society where if you are needing any kind of help, you should be ashamed of it. And I am the first to say, give me all the hell I need and you need it.

27:02 That's exactly right, and give everyone you know, this United States. We are the richest country in the world, and it's shameful that we don't universal health care. It's saiful that every kid in school isn't given meals pure. Yes, it is shameful that we take our veterans who sign a blank freaking check to this country for as long as they serve and when they're done, bye bye. Now yeah, see it for. Your benefits and our children, and especially our children with special needs, we should be giving them everything to make sure they have the best life they can have. So Liz, what you do, I'm serious. I talked to you about it before the show, and I actually hope that you come and join our lineup because you can't an advocate out here. We need somebody to take this platform and blow it up with advocacy for our kids, for the people who need us the most, because until their voices are strong enough to be heard, who else is going to advocate for them but us? How can people find you, Liz?

28:12 I'm very active on Instagram and Facebook, So my Instagram handle is Elizabeth dot loundes l O U N S. And then my Facebook is Elizabeth Teresa. That's usually where I post my big political and advocacy rants. All of Liz's links. Moms reach out, reach out. Yes, please are not alone so often when you have a child with special needs or tremendous rare. Yes. And I used to work yourself. Yes. And I used to work in social work, so I can handle whatever kind of medical or snap benefits, whatever kind of question there is with those two because I used to work in social work, so I have that background as well.

29:00 Again, I encourage you to reach out. Liz. Thank you so much. Thank you so much for having me or are you kidding? Like I said, I really hope you've become part of our lineup. I really do. Thank you, and for all of you out there listening, Thank you so much for being here. We're going to close out with our fabulous theme song from Smith's Sisters and the Sunday Drivers. So till next time. This is Dory Di Carlo saying, go out and create a marvelous you. Bye for now. She is sure, she is. Sure, she is strong, she is strong, she is true, she is true. She is Braise Bray, she is bol. She is you, is you, she is you.

29:42 She is sure. She is sure. She is strong, she is strong, she is true, she is true. She is Braise Bray. She is bol. She is you. She is you. She is you, she is you. Sure of herself. Yeah, she takes care of Bizz. Powerful and strong. Yeah, she knows who she is, has integrity, woman, strong and true. You know her by name. See this woman is you. She is sure, she is strong, is strong, she is true, is true. She is brave, she is. She is you. She is you. She is she is sure, she is strong, is strong, she is true, is true, she is brave, she is.

30:30 She is she is you, she is you. She is adds value and hope has proved to be brave. See it's never too late, never time to behave Reaching for dreams doesn't matter the age believes in herself, unleash from her cage. She is sure, she is she is strong, is strong, she is true, is true, she is brave, she is bold. She is you. She is she is, she is sure, she is she is strong, she is strong, she is true, is true, she is braid, is brave, she is she is, she is you.