How Adaptive Equipment Changed My Son’s Life - A Place of Yes | A Grief Podcast

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[00:01]
Amelia Lawrence
To say I don't grieve for what could have been would be an absolute lie. I would love it if I could hear my son sing Jingle Bells or hear the way my name sounds or the way his name sounds. Or I get glimpses on his good days. But they're very, very small, very quiet glimpses.
[00:29]
Heather
Welcome to A Place of Yes, a podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show. This week's episode is a really special one. When we started planning this season, we reached out to some of the companies we work with at Jake's Help From Heaven, especially the ones who really get what we do. They don't just understand our mission, but they actively support it. Freedom Concepts is one of those companies. They're all about creating products that truly improve the quality of life, like adaptive bikes and chill out chairs. They're innovations that change not just lives, but entire families. In our conversations with them, they introduced us to today's guest, Amelia Lawrence. Amelia is a powerhouse mom from Tennessee, mom to Leo, her rare warrior, and daughter Scarlet. She knows the rare journey inside and out, and the way she shares her story will resonate deeply with those of you living it, and it'll inspire those of you who aren't living it. She also shares just how much impact a company like Freedom Concepts can have, not only on Leo, but on their entire family. I hope you enjoy this conversation with Amelia. This episode was made possible by Freedom Concepts. Today's episode is a super special episode. We're talking with Amelia Lawrence. And I got connected with Amelia through Freedom Concepts. And Freedom Concepts is an organization that I have worked with for several years through Jake's Help From Heaven. When I do ordering for Jake's Help From Heaven, which is the organization that my husband and I started after our son Jake passed away, A lot of companies we work with just don't make life easy, right? Like, they make it really hard. And even as a nonprofit who's trying to take the burden off of families and get this equipment and gift it to families who need it, we still have these really hard times with some companies. There's a handful of companies that work with us so well, Freedom Concepts being one of them. So when I was talking to them about some of the bikes and the Chill out chair and just items that we work with at the organization and wondering if they would be like, kind of interested in working with us on the show, they were like, absolutely. And they shared with us you and they told us a little bit about your son Leo and how he has actually both a bike and a chair. I'm really excited to kind of get into all of the. All of the cool things that adaptive equipment can do and the changes it can make. But first off, will you just share with the audience a little bit about yourself and about Leo and your family?
[03:14]
Amelia Lawrence
I am the mom of two kids. I have a typical developing child that's four and full of energy. Her name is Scarlet. Then I have my little miracle, Leo. Leo is an awesome kid, and I'm very lucky to be his mom. I have a husband named Ashley who's a mechatronics engineer. And our family lives in middle Tennessee. So we get to do fun things like adaptive sports. We participate in adaptive climbing. Try My Best Triathlon, which is really important with the bike because Try My Best Triathlon is like a full scale triathlon. We have typical developing peers and people that need a lot of help. It was custom fitted to us. Leo could complete the race on it. And the reason I felt, like, a lot of passion about coming on your podcast, actually, is since my son had SDR surgery, I've been saying, this is our year of yes. This is my year to stop having to say no to things, because now he can move, he's mobile. We finally have equipment like the Chill out chair, the bike. We have organizations that do have adaptive sports and rock climbing, even if you're in a wheelchair and you can't move your legs. I honestly haven't really found many things that I have to say no to. I think trapeze might be something that.
[04:35]
Heather
I don't know how I draw the line. Yeah. So I love everything about that. So the name came from literally kind of what you said. Like, after Jake passed and we started our foundation, that was like, our mindset is that we wanted to come from a place of yes. Right. Like, we wanted to be able to make an impact on. On families that were like mine. Like, families that I knew really intimately. Like, I know that life of, like, a kid that needs extra. Like, needs adaptive equipment, needs a little extra help, needs the support. And we wanted to be able to do kind of all the things you're saying. Like, similarly, I had a typical kid and I had Jake, and I wanted to be able to do things as a family of four and not have it be two vastly different things. So I love that this is your year of yes. And I love that we got connected during it because I think that just kind of feels cool to me. Talk to me about some of Leo's, like, diagnoses.
[05:32]
Amelia Lawrence
So Leo was born typical developing, stressful pregnancy, but, you know, good things are worth all that. And so we had him. And at about two weeks old, he started seizing and turned blue. And we found out that he had come down with meningioencephalitis, which is a brain infection. And it's fatal in a lot of cases if you don't catch it early enough. And so that's the cold sore virus getting into your brain and your spinal cord.
[06:00]
Heather
And you noticed with. Because he started having seizures. Like, that was the.
[06:05]
Amelia Lawrence
So I requested to go to the doctor that morning. He just. He didn't look right. And I was a new mom. And so everyone was telling me, you're just panicking. It's new mom stuff. Don't worry. I had been in nursing school before I became a mom. I knew something wasn't right. And then his color was off. He looked bluish to me.
[06:24]
Heather
And, you know, just that mother's instinct. If anyone out there is listening, like, trust your gut.
[06:31]
Amelia Lawrence
And like, nobody. I called the on call provider for his doctor's office, and it took an hour to call me back. I'm like, something doesn't feel right. So I called my ex, his dad, and said, you need to get home. Something is wrong with the baby. He said, you need to calm down and sleep. If he's not making noise, he's fine. You need to rest. You've been through a lot. You need to rest, Amelia. I said, I'm not going to rest. There's something wrong. Thankfully, I called my mother. My mom made me brave when all of this stuff was going on because I was really sick when I was little. I had scalded skin syndrome. And so my mom was used to, like, this is the absolute worst case scenario. You're going to get. And you can cry later.
[07:12]
Heather
Okay. Yep.
[07:13]
Amelia Lawrence
Yeah. I called my mom and I was like, mom, I think I'm watching my kid have a seizure. She goes, why the hell are you calling me? Call 91 1. What's wrong with you? She said, I'm on my way over. So my mom got there faster than EMS did.
[07:24]
Heather
Okay.
[07:25]
Amelia Lawrence
EMS for a pediatric seizure. I'm not sure what was going on in our city that night, but they weren't in route yet by the time my ex had gotten home. So my ex loaded my child. This is at 45 minutes. My ex loaded my child into the.
[07:40]
Heather
45 minutes, and they had it. Wow.
[07:41]
Amelia Lawrence
Yeah. And it was a focal seizure. And so it went from Focal, which is a partial seizure, to my understanding, to a full body seizure. And you could watch it go from his eye to his hand, to his leg, to his other leg to his hand to his other eye. And what I was watching was brain death. It was really rough. And so we got to the hospital and finally somebody took me seriously. The nurse behind the counter took one look at him and she turned sheet white, and she grabbed his carrier from me and ran. Like, when I say ran, I have never seen someone go so fast.
[08:14]
Heather
Thank goodness, though, right? Like, thank goodness that she did.
[08:16]
Amelia Lawrence
That was the one person that listened to me. And she ran to a trauma bay. She started yelling. I don't remember what she was yelling, but we had a social worker come grab us. It's me and my ex and my mom. And I don't remember the next about 30 minutes, but I remember going into the trauma bay and giving them, you know, how much he weighed at home, what his birth was, like, what his doctor's name was. And then he wasn't moving or crying or anything. And all these tubes started getting put in him. And I got pulled backwards, words out of the room. And then we had a social worker come and put us in a room. And that is never a good sign. Because I worked in long term care that kind of makes your heart drop into, like, the bottom of your stomach. And so my mom sat there and held my hand and she said, you don't cry. You're gonna hold it together. You're gonna help your child. And when everything is done and you go home, you can cry. So I held my mom's hand and listened and was told that my child had had a stroke, that he was going to be put in a coma, that they were going to transfer him to the pediatric ICU upstairs, and that we needed to make plans for the worst case. And that if we needed help arranging a funeral, that Vanderbilt would be more than happy to help us with that. And if we needed to see the chaplain, one would be brought down.
[09:32]
Heather
And that's also. That's never a good sign when they ask for the chaplain that I know firsthand.
[09:37]
Amelia Lawrence
Yeah, that's all within two hours. And so my memory kind of fades from that. So my mom went and checked on my son. She got me standing back up and was like, okay, now you're gonna go see him, and this is gonna be really scary. And I went into the icu. He was in this little tiny acrylic bassinet thing. My sweet baby had all of these tubes and wires coming out of him, helping him breathe. And you don't ever think about begging God to hear someone cry, But I know I begged to hear him cry. The adventure continued. And on the 14th day of our hospitalization, we found out that Leo had necrotizing endocolitis. We'd gotten put in a step down unit because we had come off of the vent and everything. And I went to change his diaper, and it was bloody.
[10:26]
Heather
Oh.
[10:26]
Amelia Lawrence
I closed his diaper back up. I kissed him on the head and handed him to my mom, and I sprinted into the hallway and got a nurse. About an hour later, we were back upstairs in the ICU discussing whether or not he could have surgery or not because he was so tiny and it was safer for us to wait. So we didn't do surgery because the risk was too great to him. So my child had necrotizing into colitis, had had three strokes, and at this point was struggling to breathe on his own. And I had to not go crazy, and I had to sit in the hospital. It was a mess. It was a big mess. I don't think anybody left that hospital. I think we all kind of lived there. They have these rooms in the ICU that are like beds and you can shower. And we got him. We go yoed for a while with the step down unit, and then he would destat and we'd have to go back up or we would start convulsing uncontrollably and have to go back up. I've had to watch my child convulse. I've had to sign paperwork to get a femoral picc line. I've had to argue that he needs a double cannula femoral picc line since he's on tpn. I've had to make a room full of doctors listen to me without swearing or screaming.
[11:40]
Heather
How long was your hospital stay?
[11:42]
Amelia Lawrence
10 weeks.
[11:43]
Heather
10 weeks. So much of what you said, I know those feelings and those emotions, right? Like, I know, you know, so Jake was born healthy. He had a seizure out of nowhere at eight months. So a little bit older, like a little bit bigger, sturdier, stronger. Those things you talk about having to hold down your tears, keep it together, show up. That feeling of, like, you know, you are afraid your child is going to die. And you have to do everything in your power to prevent that and to make, you know. I remember fighting with doctors and, you know, we were at Boston Children's Hospital, so we were, like, in a big pediatric hospital, and it was filled with sick kids, but at Certain points, Jake was certainly the sickest. And I was like, you know, he needs all the attention. Like, I know you got other moms fighting on their behalf, but you gotta make your kid the most important one because you wanna bring him home. I know that fear. And I. I'm always so sad when I know that there's other people that are going through that journey. Cause you're right. Like, you can have all these other horrible experiences in life, but there is nothing quite as tough as watching your little baby hooked up to so many machines and trusting, like, having to trust other people to do things that sometimes you don't even really understand. They would have to put Jake into, like a coma. Like a medically induced coma. Cause it was like, you know, let's. And I'm like that. Like, he's finally breathing on his own and doing these things. And now we're putting him into this coma so that his brain can rest. But it's hard to trust. So he was there from two weeks to like 12 weeks. Is that about right?
[13:18]
Amelia Lawrence
Yeah.
[13:19]
Heather
And then you came home and. Right. And you come home. That's also a hard adjustment. Right? Cause you come home to such a different life than you left.
[13:27]
Amelia Lawrence
Well, we came home and his dad and I made the choice to split. Being in a marriage or engaged or any kind of relationship and parenting with a child that has any extra needs, let alone profound life threatening disabilities. I'm very fortunate to have met someone that has a relative with Angelman's. My husband is very, very, very used to this life. You know, it's a lot. So when we got home from the hospital, it was an adjustment with his dad helping me with, like, what are we going to do with insurance? So we had to do all that and like, figure out how to move this big heavy equipment because I couldn't do it.
[14:11]
Heather
And this piece of us as moms of medically fragile kids, we tap into this piece of us that we did not even know existed. Right. Like, so how old is Leo now? He is seven.
[14:23]
Amelia Lawrence
He turned eight yesterday.
[14:25]
Heather
Turned eight yesterday. Happy birthday, Leo. So if you go back, you know, nine, 10 years and think of yourself, you never would have thought you had it in you to like, go up against the principal or to talk to these doctors or battle with insurance. Right. Like, I know I didn't. Like, I always, you know, I had some skills in these things and I was educated and articulate and blah, blah, blah, blah. But pre Jake, I had no idea I had it in me. It kind of makes us badass. Like I, like, like, you know what I mean? Like, yeah, it's like our superpower, our job is keeping any mother's job, right? Is keeping your kid alive and safe and all this stuff. But the stakes are so high for us and for you as Leo's mom. You're driving, your kid's having a seizure. Like these are split second things that you have to react on. Cause it's life or death. It's literally life or death.
[15:14]
Amelia Lawrence
While the 4 year old's in the car.
[15:16]
Heather
While the 4 year old's in the car. Like, it's just. And it's not like, oh, that is this unusual thing that happened once. I'm sure these type of things happen all the time. I wanna hear though, because when you were talking in the beginning and this made me a little envious, but you rattled off so many cool, adaptive things. You talked about a triathlon that Leo participated in. You talked about adaptive rock climbing. Like, what? That's awesome. So can you share a little bit about a. How you found that? Like, is that specific? Like Tennessee specific?
[15:51]
Amelia Lawrence
Yes. So the first thing that we found was Miracle League Baseball. And that's through Murfreesboro Parks and Recreation. As far as I know, that's available in a lot of states. What they do is pair athletes that are children or adults with peers. They even have the fire department, lots of local high schools, the police department, and they come out and they play these games. The kids get to have their face on the jumbotron, they get to have people cheer for them, and they get to pick their theme song. And so anytime they go up to bat, they get to do their little dance or their strut. And it's right next to the field where my daughter can play soccer or be on an inclusive playground. There's equipment like a swing set where if she wants to swing next to her brother down a zip line, she can do that after his baseball practice is done. Just like if my son had never had a stroke or a brain infection, if we were taking my 8 year old to baseball practice. You have no. Well, yes, you do. How jealous did you feel of other moms saying, oh, we're going to the ball field. And I can say that now.
[16:59]
Heather
I mean, it's so awesome because it's. You know, I used to have to like, get someone who I trusted to stay with Jake or someone that would take Ethan. Frankly, that sucks. Right? Because sometimes I just wanted to go with Ethan and watch my typical kid, like, do typical kid stuff. Like, you just want to do that.
[17:18]
Amelia Lawrence
And not feel guilty.
[17:19]
Heather
And not feel guilty. And not feel scared. Right. Like. Like. So the fact that that exists, I think, is just, you know, we talk a lot at the organization, and I just talk a lot about, like, how it's not always what's best for the child. It's what's best for the whole family, you know? And yes, of course, like, Leo is at the center of that. Everybody wins when that happens. Right? Like, you win because you can be a mom with both kids, needs being met at the same time, and your daughter can hang out with her brother and not have it be, like, weird or awkward or, like. Like she's giving something up. I love that. I think that is so awesome.
[17:55]
Amelia Lawrence
So Catalyst Sports, they do. I think they might be exclusive to Tennessee. They do adaptive mountain biking, adaptive hiking, rock climbing, camping. They have so many extra volunteers that understand, like, this child is primarily nonverbal. You need to give him a minute. If he gets scared, get down on his level. If he just decides he doesn't want to rock climb that day, don't push it. Yeah, yeah. They've been known to play freeze tag and harnesses and run back and forth at the rock climbing gym or play peekaboo behind the obstacles.
[18:30]
Heather
It's, like, magical, almost, like. Right. And I say this to people and not everyone understands, but it's like, you don't want to put your kid, like, in a bubble wrap. Like. Right. Like, you want your kid to have the same. Not the same, but have those experiences.
[18:44]
Amelia Lawrence
Well. And the cool thing about the triathlon. So the Try My Best Triathlon is an event put on by Vanderbilt Children's Hospital out of Nashville, Tennessee. So that's the hospital that he was born at that treated him, that we actually see our developmental team with. And so they have, like, a specific team that goes and hunts around for resources in the Tennessee area and kind of the whole Southeast. And so after the triathlon's over, they have a big barbecue contest slash resource fair. I think last year there was about 40 different, like, vendors and, like, people doing balloon animals and face painting and science experiments. And then there was these tables of, like, sled pred. Ice hockey. It's wheelchair adaptive hockey. There was the Catalyst Sports. There was an adaptive ice skating. So many of those people are parents that were passionate about stuff and got kind of irritated that it wasn't available for their kids and that. That's kind of like where my husband and I are. Before we got the stairlift, we were looking at different chairs to go up and down the Stairs. But my husband decided we needed a stairlift, so we bought a stairlift. We have an adaptive backpack called a freeloader, and then my aunt bought it for us. But it's a. Like, a backpack carrier that has a motorcycle seat and a harness across the. And leg stirrups, and it holds up to 80 pounds.
[20:09]
Heather
Okay.
[20:10]
Amelia Lawrence
And then the next step up from that is called a We carry Kevin backpack, and that goes up to about 120 pounds.
[20:16]
Heather
So you got your next stage ready? Yeah.
[20:18]
Amelia Lawrence
Yeah. And then, like, through all of these little, cool niche communities, my. My personal hobby, that just, like, makes me feel amazing because I. I can't take away what happened with my kid. I can't fix that. But I can make it less scary for other moms that are sitting in the developmental clinic with the whole, you know, the fresh diagnos. If I had had somebody walk up to me and be like, hey, do you want a glimpse into your future? It's actually pretty fun. I think it would have taken the sting out. Some of your episodes kind of, like, talk about how you channel your grief and, like. To say, I don't grieve for what could have been would be an absolute lie. I would love it if I could hear my son sing Jingle Bells or hear the way my name sounds or the way his name sounds, or I get glimpses on his good days, but they're very, very small, very quiet glimpses.
[21:13]
Heather
You learn how to see them more and more over time. It's almost like it's a skill. But I love what you just said, because we've talked about it on the show before, but it's almost like we become the people that we wish we had. I had Ethan first, and then I had Jake. And I don't know. I was 32 or 33 or whatever I was. But everything I knew about life for those first 33 years in a split second was just different. The way my path in life, like, the future that I thought I was gonna have, the parenting style, I thought, like, all of that stuff is just gone, and you're just a deer. Or I was a deer in headlights. I was like, what? And. Yeah, but I think with time and like you said, you figure it out. You lean into it. You, like, figure out what you need to do to be brave and to be there for your kid and to give your kid the vision, very best life possible. And then if you can channel that and figure out how to help someone else, it just makes it. I don't know. And I love what you Said you, like, if you see a glimpse into your future, you're gonna. You're gonna love this life. The life is hard, you know, and it's. But it's also beautiful. It's always, like, an ongoing theme in the show. And, you know, my husband kind of rolls his eyes sometimes because I say it all the time. He's like, yeah, yeah, yeah, I know, Heather. Two things can be true, but it is, right? Like, it can be insanely hard, but so beautiful, too.
[22:29]
Amelia Lawrence
I was a completely different woman before I had my son. I was all gas, no break, live fast, die young, that kind of lifestyle. Hopping on the back of motorcycles with boys I had just met. And then I had my son. And I will never forget, actually, after his SDR surgery.
[22:47]
Heather
What is SDR surgery?
[22:49]
Amelia Lawrence
So it's a selective dorsal rhizotomy. It's a spinal surgery. And they go in and they clip the. The little nerve endings that are causing leg spasticity. And so we got really lucky and got that surgery done. CP gets worse as you get older. In my son's case, he has a type of CP called spastic quad cp, and so it affects his legs, his arm, his torso, his mouth. And so as you get older, things tighten up. Your epilepsy gets worse, and so hitting it hard when you're young is really essential. So. You know how I said I used to be really timid? Well, the first person I kind of had to stand up to was a doctor, a nurse, and then my son's own dad, he wasn't so sure about the surgery, and I had to be.
[23:34]
Heather
Like, no, for real, we're doing this. Yeah. Like, we're gonna get this done. Yeah.
[23:38]
Amelia Lawrence
Didn't give me much pushback, but, like, being like, no, for real. Research it. When we got done with surgery, I think my ex was on the way up to the hospital, so he wasn't in the room for this. But my son, his catheter bag had, like, occluded. And so all that needed to happen was I needed to move a valve on it. But they had a nurse come in that wasn't familiar with aac, which is the speaking tablet. Also didn't speak sign language. I don't think she knew I was in the room either. So she came in and started messing with the bag, and it was affixed to my child's leg with surgical glue or some kind of tape mechanism. And he started screaming, and she didn't stop. And so I. I came flying out of that bathroom like I was going to eat Her.
[24:20]
Heather
Yeah. You did? Yeah.
[24:21]
Amelia Lawrence
It was just like, I'm so sorry, I'm not a nice woman and you need to step back, get the hell away. Yeah, you know, younger me would have been like, oh, I'm sorry, could you please. I'm sorry to bother you.
[24:36]
Heather
You can rest easy kind of knowing that you will do what it takes. I love this piece of the equipment and the places we can go. So I want to like, I want to segue a little bit into like freedom concep. So from what I know about them is they are over 30 years old and they started because someone made a request to build a bike for a kid with cerebral palsy. And this group of people did it. It was a huge success and they kind of realized they were onto something special. It has then evolved, you know, over 30 years into a company that really customizes products for kids like Jake, for kids like Leo, for kids all over the the world, I think, you know, I mean, I know they're based out of Canada. They're kind of like these modern day problem solvers. Right. Like they see everything we've just talked about. They see these kids that need extra support but want the same life that typically abled kids have. And I love that they exist for that reason. You have a bike and a chill out chair, right? That's correct. Yeah. You said earlier that Leo participated in that triathlon and he was like one of the few that brought his own bike.
[25:42]
Amelia Lawrence
Yeah, he actually has done like I think five or six of the triathlons. Our bike goes to every single one of them and the bike actually will grow with him. So. Okay. We got this bike because kind of a horrible situation. So we found online that there were these adaptive bikes called amtrikes. Yeah. We have a friend that lives in Mexico. She had left hers, I guess with like a nanny or somebody in Virginia. I asked my husband and someone else to go and try to pick it up. That bike turned out to be completely rusted out and not usable. So. Okay. In the same city was another one for $450. So one of my mom's friends went and picked this bike up. Okay, we get this bike home and it is a just tetanus case waiting to happen. The spokes were rusty and pointy and it just. Absolutely not. I went on the Murfreesboro Marketplace and some girl had tagged me in a couple of these bikes and one was really rusty, one was an adult sized bike, and then one in the description said it was a different bike than what it was. So I went ahead and started a GoFundMe to pay for this bike. Paid $850 for this bike. Got the bike home. The bike was my sized.
[27:02]
Heather
Oh, Jesus.
[27:03]
Amelia Lawrence
Meant to go for a five year old. I got a call from another one of my friends. Hey, I need you to look up this company called Freedom Concepts. I think I found a bike for your kid and I think I can find a way to pay for it. I said, I'm not getting my hopes up, but okay. She said, okay, just call this lady. The worst thing she can say is no. So I called and I said, hey, I have a kid with cp. This is going to be my third attempt to get him a bicycle. I don't know what to do and I can't afford to start a new GoFundMe. And because everyone's going to think I'm.
[27:34]
Heather
Greedy or think you're scamming them or like something. Yeah.
[27:37]
Amelia Lawrence
And she was like, honestly, I think I can help you out. I'm going to send you a list of a few organizations and we'll submit an application to them and we'll see what percentage they'll pay for of the bike. And if we can't find somebody, we'll look at a second list and we'll figure it out. But she never said, oh, no, man, this is a definite no or a definite yes. It was, we'll figure it out.
[28:01]
Heather
And I want to jump in because I do think that's what makes Freedom Concepts such a special and unique company. Because that is exactly what they do. How many times in our life do we call and we're told, no, you can't do that. No, it doesn't qualify. No, we can't help. Like, in a world of no's right, they are. Now I'm being cheesy, but they are a yes.
[28:21]
Amelia Lawrence
And like, it's. You know as well as I do you just brace yourself for no. But to hear me describe my child's profound medical issues and then have someone on the other end of the phone not seem rattled and not say, I'm so sorry, it was, how can I help? Oh, well, I don't have the answer to that right now. Or I think I might have the answer, but I don't know if I'm right. We can figure it out.
[28:45]
Heather
I love that.
[28:46]
Amelia Lawrence
It took about three months, but through that whole process, that company checked in on me, texted me, emailed me, asked me if I had questions, asked if I felt good about the process, asked if I had any questions about sh. Of the bike. Once the. The bike had gotten shipped out, they checked in to make sure we were happy with it. They still check in on us to make sure we're okay. They told me what to use on a stain on the bike. Like, they kind of feel like family.
[29:13]
Heather
Like they're real people and they care about. Like they know that we're real people and they care about us.
[29:18]
Amelia Lawrence
They bothered to learn my kid's name, which is a big deal. You know as well as I do my kid to a doctor is his diagnoses, not Leo. But to this company, he was Leo and he likes dinosaurs. And that was an important detail for them to pay attention to, to treat him like a little kid.
[29:34]
Heather
Did they put dinosaurs on the bike?
[29:36]
Amelia Lawrence
Yeah, yeah, he has a squeaky dinosaur on it.
[29:38]
Heather
So I. One of the things. And I didn't know this because typically, like, through Jake's hell from heaven, when we buy bikes, we're sort of buying more standard bikes because I didn't know they did this. And in one of my early conversations with them, as we were talking about working together, they were like, no. Like, we love all that information. Like, if you can say that your child likes dinosaurs or spongebob or like, whatever, they make an effort to incorporate that. You know, sometimes the special needs equipment is so special needs looking. Right. Like, it's like big and ugly.
[30:13]
Amelia Lawrence
Grandma's walker.
[30:14]
Heather
Yeah. Like, it just looks like, ugh. Instead to, like, provide for Leo, a cool kid's bike. Like, I love that. Other kids look at these and they're like, oh, they're cool. We like them. Or like, look at it. And that's also so special. Right? Because otherwise it's not just this clunky, institutionally looking thing.
[30:33]
Amelia Lawrence
It's less like a cage and more like something to actually be helpful.
[30:38]
Heather
So he uses this bike to do triathlons.
[30:42]
Amelia Lawrence
Well, between that and it's got a hand steering part on the back. So if he's having, like a bad eye day or if he's just stressed out and wants to feel what being on a bike is like, but doesn't really have it in him to steer the bike that day, I can steer it from behind him. It's got a handle where if I want to run full force and let.
[31:03]
Heather
Him feel that feel like the wind and the whole.
[31:06]
Amelia Lawrence
I can do that. Yeah. The handbrake on the back is really nice because of the CVI and the epilepsy. I know as long as my hand's on that, I can let him run wild and do whatever But I've always got that to make sure he's safe. That's a giant thing because the other bikes that we trialed, that brake wasn't strong enough to stop immediately and you need a gradual stop.
[31:28]
Heather
And that's so great for your daughter too, right? Like, for her to be able to be like, hey, I'm doing this with my brother. Or look at my brother's cool bike. Like, I love it. I think it's so great. One of the things that we at Jake's Haul from Heaven, purchase more. And it's honestly this piece of equipment that I'm so mad it didn't exist. And maybe it did exist, but I didn't know about it. For Jake, the chill out chair is so cool. Leo has a chill out chair. Tell me about it. Like, does he love sitting in it?
[31:56]
Amelia Lawrence
He's currently sitting in it playing as a Nintendo Switch. We homeschool him now because of the epilepsy. Those seizures take a really big toll on Leo's body, just like the CP does. But it makes it really hard to sit up. What most people take for granted is having a nice stable airway. And so for kids like Leo that have a difficult to clear airway because of shallow coughs, because of a stroke or something like oropharyngeal dysphagia, where we have a lot of drool happening, it's rough. So that chill out chair has a five point harness in it that kind of holds him more upright. And so even if he were to have a seizure, it's padded on both sides. And so if he were to smack his head on it, he wouldn't sustain a head injury. We can do breathing treatments for him in and you can lean back because it's kind of set up like a little. Almost like a how a little bitty car seat for like a baby set up. But it gives them dignity. So it's not like, oh, you're a little baby in this car seat. It looks like a lazy boy.
[32:58]
Heather
I was just gonna say they look like lazy boys.
[33:00]
Amelia Lawrence
It's like a tactical lazy boy, basically.
[33:03]
Heather
It makes such a difference. Like, and it makes a difference for your whole family too, like, because then they're sitting in a chair that looks good. I feel vain when I say things like that, but it matters. Like, it's important.
[33:14]
Amelia Lawrence
But for his dignity, like, the chill.
[33:17]
Heather
Out chair is really cool in so many ways. One of them that I didn't know about was that each one is made from scratch for each user. So it's totally customizable each of the accessories are for each individual child, so you are able to get what you need from the chill out chair. If you need a tray, there's a tray available. They will build it with that. If you need a headrest, they've got that.
[33:39]
Amelia Lawrence
He does video calls with people and he's willing to. His chill out chair is set up as a feeding chair as well. So it's got the tray attachment that swivels. It's given him the ability to control that swivel because of the way the cranks are that control how much it swivels. He can use that because Freedom Concepts cared enough to look at his medical record and say, okay, which side was most affected by this stroke? We'll put all the controls on the side that is stronger. What does he need as far as, like, leg and hip support? So the people at Freedom Concepts looked at all of his medical stuff, talked to his physical therapist, and then worked with a specific DME company to have someone physically come out, look at Leo, take measurements, and then come back to Freedom Concepts and say, okay, here are your options. This is what would help him with this, this and this. We think from a medical standpoint and a quality of life standpoint, this would work best. Here are your options with this. It was amazing. Like, they literally said, oh, no, you don't have to worry about a thing. We've got this amazing medical device that your child can eat in. I got to sit down and eat a meal with my son.
[34:47]
Heather
Actually, most people listening to this podcast will understand the value of what you said. Right? Because, you know, I mean, I certainly, like, it's almost like your child. When you have a child with these kind of CP and disabilities, they're in a different chair or they're in a different room, or you're eating and then you're feeding them. But when you can all be around a table and share this space together, it's beautiful. Like, it's just. And you don't know what's missing until you have it back a little bit. So, you know, I mean, like, people could listen to that and be like, oh, what's the big deal? But it's a huge deal.
[35:21]
Amelia Lawrence
I've never actually. Unless someone else was feeding him and I was inhaling my food really quick. I've never actually gotten to just sit there and share a meal with my kid. And our first meal was a peanut butter and jelly sandwich. It makes you really emotional again because, you know, a little bit of a crybaby. But I made a peanut Butter and jelly sandwich with some jelly my mom had made, and so that's his favorite jelly. And we had been trying so hard to get him to eat a sandwich. Leo also has a sensory processing disorder. That chair's kind of turned into his safe space, though, because the harness puts enough pressure on him. It's got pads on it. Yeah.
[35:57]
Heather
But he can feel the input. Yeah, yeah.
[35:59]
Amelia Lawrence
So it puts enough pressure on him to let him know he's safe. And he's like, you know, not gonna fall off the chair if he coughs. If he does need to cough, he knows he's safe. And then that tray, he can put it in front of him, but if he's having, like, an ick day where he doesn't want to see the food, he can push it off to the side and take a breather. That's a game changer. And so sitting at the table with my son, who asked me to cut this peanut butter and jelly sandwich in half and eat it with him, I'm like, yep, that's what we're doing.
[36:28]
Heather
You're like, I'm doing it.
[36:29]
Amelia Lawrence
I got to watch my son's eyes as he tasted the jelly, tasted the peanut butter, chewed the bread, and felt safe.
[36:38]
Heather
It's like a place like Freedom Concepts that gives you this ability to have these moments that are so. After. I don't know how long ago that was, but, like, you still get emotional about it because it's a huge moment for you and for Leo, for someone.
[36:52]
Amelia Lawrence
Like me or you. If I'm like my son who had a stroke, who I had to make difficult decisions about where I would bury him with a social worker from the hospital. This company has given me the ability to go and run and ride bikes with him and go chase an ice cream truck to get a popsicle. My little boy got to. With his sister, got to chase an ice cream truck and get a spongebob Pop.
[37:18]
Heather
I mean, I have chills, right? Like, those are. And they're moments you never thought you would have, and now you have them, not just once, but, like, repeatedly. Like, this is part of your life now.
[37:28]
Amelia Lawrence
I really wish that more people knew about Freedom Concepts because, you know, I. I don't know if you can tell, but I'm an info dumper. So when Leo went to public school, I was like, I have all of these pamphlets. They're like, what? I'm like, I have an obnoxious amount of pamphlets to give you. Here's how you get a bike. Here's how you get someone to help you pay for it. Here's how you get a chair. All of these things that were available in this brochure I wanted to make sure other parents knew about. There's not a manual for this.
[38:00]
Heather
No.
[38:01]
Amelia Lawrence
No one tells you, hey, if you have a supportive chair, your child that struggles to eat and is scared of choking, they're going to feel safe and they're going to want to try to eat more. If you can get them supported, like.
[38:14]
Heather
And you just hit on this. Like, people don't know. Right? Like, and you don't even know in the beginning. You don't even know what you don't know. So you don't even know what you want, really. Right. Like, you don't even know. The more I learned about Freedom Concepts, the more I wanted to do, like, an episode like this. And when I was so grateful when Sydney introduced us. Cause she's like, I kind of feel like Amelia. Like, and you guys, you're gonna. Like, you know, you're gonna speak the same language. And we do. And it's. So. One of the things I've loved about this podcast is that there's people like us all over. And it used to feel. It didn't used to feel that way to me, but now there's families like mine, there's kids like Jake, there's kids like Leo, like. Like, it makes you feel less alone, and it makes the world feel, like, smaller and better and tighter. And then you get someone, like, Freedom Concepts working with us, not against us. It's just good stuff.
[39:03]
Amelia Lawrence
I don't know if this makes any sense, but it feels like Freedom Concepts. All the other DMI companies I've had to work with for my son. Listen to the doctor first. They want to talk to the doctor. They want to talk to the therapist, because that's the expert and that's the person that knows everything. And Freedom Concepts wanted to hear from me and my kid. They wanted to talk to us about what we needed first and about how they could help us get it. All these little nitty gritty details that nobody's ever cared to ask because they're not important. With his diagnoses, the dinosaur thing, or the fact that it's easier to use his right hand than his left hand. I didn't have to ask for any of those things. I didn't know that stuff existed. But they had an expert who was like, yeah, no, even if your child's completely unconscious, this bike is still safe for them. I'll make sure of it.
[39:49]
Heather
I mean, and that sort of wraps it up perfectly. Right? Like, it's. And. And it was interesting because in this show, like, I can't get on and talk about things that I don't actually believe in because it's just not my vibe. It's not what I do, you know? Like, that's just. It's not who I am. But this is so easy to talk about. And it's funny because I. That wasn't one of my, like, talking points, but it's almost one of the most important things, right? Because you're absolutely right. Our kids are defined by their diagnoses, and they're defined by who their doctor is. There's so much more than that. So to have a company that takes into consideration what really matters and what is unique to our child not is. It's just awesome. Amelia, I have loved talking with you. Thank you for being on the show. Thank you for sharing so much of your world with my audience and with me.
[40:36]
Amelia Lawrence
Yeah, no, thank you for caring about our world and, like, all the other people in our shoes.
[40:43]
Heather
Thank you for listening to A Place of Yes, Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend. It would make a world of difference if we could just reach more people and share the work that we do and the stories we want to tell. Thank you so much for watching.

Summary6 min read

A Place of Yes | A Grief Podcast: How Adaptive Equipment Changed My Son’s Life

Episode: How Adaptive Equipment Changed My Son’s Life
Release Date: May 22, 2025

Introduction

In the deeply moving episode titled "How Adaptive Equipment Changed My Son’s Life," host Heather of Bright Sighted delves into the transformative journey of Amelia Lawrence and her son, Leo. This episode, facilitated by Freedom Concepts and Jake’s Help From Heaven, highlights the profound impact that adaptive equipment can have on families navigating the challenges of pediatric disabilities. Through Amelia’s heartfelt narrative, listeners gain insight into the resilience, love, and unwavering hope that define her family's path.

Amelia’s Story: A Mother’s Journey Through Tragedy and Triumph

Amelia Lawrence opens up about her life as a mother to two children: Scarlet, a typical and energetic four-year-old, and Leo, her “rare warrior.” She shares the harrowing circumstances surrounding Leo's early life, marked by severe medical challenges that would forever alter her family's trajectory.

Amelia Lawrence [00:00]: “To say I don't grieve for what could have been would be an absolute lie. I would love it if I could hear my son sing Jingle Bells or hear the way my name sounds or the way his name sounds. Or I get glimpses on his good days. But they're very, very small, very quiet glimpses.”

Leo was born after a stressful pregnancy but initially appeared healthy. However, at just two weeks old, he began experiencing seizures and turned blue, leading to a diagnosis of meningioencephalitis—a deadly brain infection if not treated promptly.

Amelia Lawrence [05:31]: “Leo was born typical developing, stressful pregnancy, but, you know, good things are worth all that... he started seizing and turned blue.”

Facing skepticism from her ex-husband and medical professionals, Amelia's maternal instincts drove her to seek immediate medical attention, ultimately saving Leo’s life.

Coping and Adjustments: Navigating a 10-Week Hospital Stay

Amelia recounts the intense 10-week hospitalization period where Leo battled multiple health crises, including seizures, a stroke, and necrotizing enterocolitis. During this time, Amelia had to remain strong for her family, relying on her own experiences with illness to endure the emotional and physical toll.

Amelia Lawrence [07:11]: “My mom made me brave when all of this stuff was going on because I was really sick when I was little.”

The decision to enter a medically induced coma for Leo underscored the gravity of his condition. Throughout the ordeal, Amelia had to balance holding back her tears while making critical decisions to ensure Leo's survival.

Finding Adaptive Equipment: The Path to Empowerment

Upon Leo’s discharge, Amelia and her husband Ashley faced the daunting task of integrating adaptive equipment into their daily lives. Their search for suitable adaptive bikes and chairs led them to Freedom Concepts, a company renowned for their customized solutions for children with disabilities.

Amelia Lawrence [28:45]: “It took about three months, but through that whole process, that company checked in on me, texted me, emailed me, asked me if I had questions, asked if I felt good about the process... They still check in on us to make sure we're okay.”

Amelia describes her initial struggles with finding reliable and safe adaptive bikes, including failed attempts with rusted and unsuitable options. Her encounter with Freedom Concepts marked a turning point, as the company demonstrated genuine care and commitment to meeting her son's unique needs.

Impact of Adaptive Equipment: Transforming Lives and Families

The adaptive bike provided by Freedom Concepts allowed Leo to participate in triathlons and adaptive sports, fostering a sense of normalcy and inclusion within his family. The bike’s design included features like hand steering and robust braking systems, ensuring both safety and enjoyment.

Amelia Lawrence [31:55]: “He's currently sitting in it playing as a Nintendo Switch. We homeschool him now because of the epilepsy... The chill out chair has a five-point harness in it that kind of holds him more upright.”

In addition to the bike, the Chill Out Chair became a sanctuary for Leo, offering him stability and safety during meals and play. This chair not only accommodates his medical needs but also enhances his quality of life by allowing him to engage in everyday activities with dignity.

Amelia Lawrence [35:58]: “If you can get them supported, like... sitting at the table with my son, who asked me to cut this peanut butter and jelly sandwich in half and eat it with him, I'm like, yep, that's what we're doing.”

These adaptive tools have not only empowered Leo but have also strengthened the bonds within Amelia’s family, enabling shared experiences that might have otherwise been impossible.

The Role of Freedom Concepts: A Beacon of Support and Customization

Freedom Concepts stands out in the realm of Durable Medical Equipment (DME) providers due to their personalized approach and unwavering support. Unlike other companies that may prioritize protocols over individual needs, Freedom Concepts invests time and resources into understanding each child's unique situation.

Amelia Lawrence [39:03]: “Freedom Concepts... wanted to hear from me and my kid. They wanted to talk to us about what we needed first and about how they could help us get it.”

Their dedication is evident in the meticulous customization of equipment, ensuring that each product addresses the specific medical and personal requirements of the child. This personalized care extends beyond the initial provision of equipment, with continuous follow-ups and support to guarantee satisfaction and effectiveness.

Conclusion: Embracing a Place of Yes

Amelia Lawrence’s story is a testament to the resilience of the human spirit and the transformative power of compassionate support. Through the provision of adaptive equipment by Freedom Concepts, Amelia and her family have been able to reclaim moments of joy, participation, and togetherness that were once out of reach.

Amelia Lawrence [37:17]: “With his sister, got to chase an ice cream truck and get a SpongeBob Pop.”

Heather and Amelia emphasize the importance of accessible, individualized solutions for families dealing with similar challenges. The episode underscores the significance of companies like Freedom Concepts, which not only provide essential tools but also restore hope and enable families to thrive amidst adversity.

Final Thoughts

This episode of "A Place of Yes" beautifully encapsulates the intersection of grief, resilience, and the indomitable will to create something positive from unimaginable hardship. Amelia Lawrence’s journey, supported by Freedom Concepts, serves as an inspiring example of how adaptive equipment can fundamentally change the lives of children with disabilities and their families.

For those seeking guidance, support, or simply a story of hope, this episode offers invaluable insights into the profound impact of personalized care and unwavering support.

Notable Quotes:

Amelia Lawrence [00:00]: “To say I don't grieve for what could have been would be an absolute lie...”
Amelia Lawrence [05:31]: “Leo was born typical developing, stressful pregnancy...”
Amelia Lawrence [28:45]: “It took about three months, but through that whole process, that company checked in on me...”
Amelia Lawrence [31:55]: “He's currently sitting in it playing as a Nintendo Switch...”
Amelia Lawrence [37:17]: “With his sister, got to chase an ice cream truck and get a SpongeBob Pop.”

Thank you for listening to "A Place of Yes." Please follow us wherever you listen to podcasts and share this episode with friends to help spread the word about the invaluable support available through organizations like Jake’s Help From Heaven and Freedom Concepts.

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Transcript98 lines

[00:01]
Amelia Lawrence
To say I don't grieve for what could have been would be an absolute lie. I would love it if I could hear my son sing Jingle Bells or hear the way my name sounds or the way his name sounds. Or I get glimpses on his good days. But they're very, very small, very quiet glimpses.
[00:29]
Heather
Welcome to A Place of Yes, a podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show. This week's episode is a really special one. When we started planning this season, we reached out to some of the companies we work with at Jake's Help From Heaven, especially the ones who really get what we do. They don't just understand our mission, but they actively support it. Freedom Concepts is one of those companies. They're all about creating products that truly improve the quality of life, like adaptive bikes and chill out chairs. They're innovations that change not just lives, but entire families. In our conversations with them, they introduced us to today's guest, Amelia Lawrence. Amelia is a powerhouse mom from Tennessee, mom to Leo, her rare warrior, and daughter Scarlet. She knows the rare journey inside and out, and the way she shares her story will resonate deeply with those of you living it, and it'll inspire those of you who aren't living it. She also shares just how much impact a company like Freedom Concepts can have, not only on Leo, but on their entire family. I hope you enjoy this conversation with Amelia. This episode was made possible by Freedom Concepts. Today's episode is a super special episode. We're talking with Amelia Lawrence. And I got connected with Amelia through Freedom Concepts. And Freedom Concepts is an organization that I have worked with for several years through Jake's Help From Heaven. When I do ordering for Jake's Help From Heaven, which is the organization that my husband and I started after our son Jake passed away, A lot of companies we work with just don't make life easy, right? Like, they make it really hard. And even as a nonprofit who's trying to take the burden off of families and get this equipment and gift it to families who need it, we still have these really hard times with some companies. There's a handful of companies that work with us so well, Freedom Concepts being one of them. So when I was talking to them about some of the bikes and the Chill out chair and just items that we work with at the organization and wondering if they would be like, kind of interested in working with us on the show, they were like, absolutely. And they shared with us you and they told us a little bit about your son Leo and how he has actually both a bike and a chair. I'm really excited to kind of get into all of the. All of the cool things that adaptive equipment can do and the changes it can make. But first off, will you just share with the audience a little bit about yourself and about Leo and your family?
[03:14]
Amelia Lawrence
I am the mom of two kids. I have a typical developing child that's four and full of energy. Her name is Scarlet. Then I have my little miracle, Leo. Leo is an awesome kid, and I'm very lucky to be his mom. I have a husband named Ashley who's a mechatronics engineer. And our family lives in middle Tennessee. So we get to do fun things like adaptive sports. We participate in adaptive climbing. Try My Best Triathlon, which is really important with the bike because Try My Best Triathlon is like a full scale triathlon. We have typical developing peers and people that need a lot of help. It was custom fitted to us. Leo could complete the race on it. And the reason I felt, like, a lot of passion about coming on your podcast, actually, is since my son had SDR surgery, I've been saying, this is our year of yes. This is my year to stop having to say no to things, because now he can move, he's mobile. We finally have equipment like the Chill out chair, the bike. We have organizations that do have adaptive sports and rock climbing, even if you're in a wheelchair and you can't move your legs. I honestly haven't really found many things that I have to say no to. I think trapeze might be something that.
[04:35]
Heather
I don't know how I draw the line. Yeah. So I love everything about that. So the name came from literally kind of what you said. Like, after Jake passed and we started our foundation, that was like, our mindset is that we wanted to come from a place of yes. Right. Like, we wanted to be able to make an impact on. On families that were like mine. Like, families that I knew really intimately. Like, I know that life of, like, a kid that needs extra. Like, needs adaptive equipment, needs a little extra help, needs the support. And we wanted to be able to do kind of all the things you're saying. Like, similarly, I had a typical kid and I had Jake, and I wanted to be able to do things as a family of four and not have it be two vastly different things. So I love that this is your year of yes. And I love that we got connected during it because I think that just kind of feels cool to me. Talk to me about some of Leo's, like, diagnoses.
[05:32]
Amelia Lawrence
So Leo was born typical developing, stressful pregnancy, but, you know, good things are worth all that. And so we had him. And at about two weeks old, he started seizing and turned blue. And we found out that he had come down with meningioencephalitis, which is a brain infection. And it's fatal in a lot of cases if you don't catch it early enough. And so that's the cold sore virus getting into your brain and your spinal cord.
[06:00]
Heather
And you noticed with. Because he started having seizures. Like, that was the.
[06:05]
Amelia Lawrence
So I requested to go to the doctor that morning. He just. He didn't look right. And I was a new mom. And so everyone was telling me, you're just panicking. It's new mom stuff. Don't worry. I had been in nursing school before I became a mom. I knew something wasn't right. And then his color was off. He looked bluish to me.
[06:24]
Heather
And, you know, just that mother's instinct. If anyone out there is listening, like, trust your gut.
[06:31]
Amelia Lawrence
And like, nobody. I called the on call provider for his doctor's office, and it took an hour to call me back. I'm like, something doesn't feel right. So I called my ex, his dad, and said, you need to get home. Something is wrong with the baby. He said, you need to calm down and sleep. If he's not making noise, he's fine. You need to rest. You've been through a lot. You need to rest, Amelia. I said, I'm not going to rest. There's something wrong. Thankfully, I called my mother. My mom made me brave when all of this stuff was going on because I was really sick when I was little. I had scalded skin syndrome. And so my mom was used to, like, this is the absolute worst case scenario. You're going to get. And you can cry later.
[07:12]
Heather
Okay. Yep.
[07:13]
Amelia Lawrence
Yeah. I called my mom and I was like, mom, I think I'm watching my kid have a seizure. She goes, why the hell are you calling me? Call 91 1. What's wrong with you? She said, I'm on my way over. So my mom got there faster than EMS did.
[07:24]
Heather
Okay.
[07:25]
Amelia Lawrence
EMS for a pediatric seizure. I'm not sure what was going on in our city that night, but they weren't in route yet by the time my ex had gotten home. So my ex loaded my child. This is at 45 minutes. My ex loaded my child into the.
[07:40]
Heather
45 minutes, and they had it. Wow.
[07:41]
Amelia Lawrence
Yeah. And it was a focal seizure. And so it went from Focal, which is a partial seizure, to my understanding, to a full body seizure. And you could watch it go from his eye to his hand, to his leg, to his other leg to his hand to his other eye. And what I was watching was brain death. It was really rough. And so we got to the hospital and finally somebody took me seriously. The nurse behind the counter took one look at him and she turned sheet white, and she grabbed his carrier from me and ran. Like, when I say ran, I have never seen someone go so fast.
[08:14]
Heather
Thank goodness, though, right? Like, thank goodness that she did.
[08:16]
Amelia Lawrence
That was the one person that listened to me. And she ran to a trauma bay. She started yelling. I don't remember what she was yelling, but we had a social worker come grab us. It's me and my ex and my mom. And I don't remember the next about 30 minutes, but I remember going into the trauma bay and giving them, you know, how much he weighed at home, what his birth was, like, what his doctor's name was. And then he wasn't moving or crying or anything. And all these tubes started getting put in him. And I got pulled backwards, words out of the room. And then we had a social worker come and put us in a room. And that is never a good sign. Because I worked in long term care that kind of makes your heart drop into, like, the bottom of your stomach. And so my mom sat there and held my hand and she said, you don't cry. You're gonna hold it together. You're gonna help your child. And when everything is done and you go home, you can cry. So I held my mom's hand and listened and was told that my child had had a stroke, that he was going to be put in a coma, that they were going to transfer him to the pediatric ICU upstairs, and that we needed to make plans for the worst case. And that if we needed help arranging a funeral, that Vanderbilt would be more than happy to help us with that. And if we needed to see the chaplain, one would be brought down.
[09:32]
Heather
And that's also. That's never a good sign when they ask for the chaplain that I know firsthand.
[09:37]
Amelia Lawrence
Yeah, that's all within two hours. And so my memory kind of fades from that. So my mom went and checked on my son. She got me standing back up and was like, okay, now you're gonna go see him, and this is gonna be really scary. And I went into the icu. He was in this little tiny acrylic bassinet thing. My sweet baby had all of these tubes and wires coming out of him, helping him breathe. And you don't ever think about begging God to hear someone cry, But I know I begged to hear him cry. The adventure continued. And on the 14th day of our hospitalization, we found out that Leo had necrotizing endocolitis. We'd gotten put in a step down unit because we had come off of the vent and everything. And I went to change his diaper, and it was bloody.
[10:26]
Heather
Oh.
[10:26]
Amelia Lawrence
I closed his diaper back up. I kissed him on the head and handed him to my mom, and I sprinted into the hallway and got a nurse. About an hour later, we were back upstairs in the ICU discussing whether or not he could have surgery or not because he was so tiny and it was safer for us to wait. So we didn't do surgery because the risk was too great to him. So my child had necrotizing into colitis, had had three strokes, and at this point was struggling to breathe on his own. And I had to not go crazy, and I had to sit in the hospital. It was a mess. It was a big mess. I don't think anybody left that hospital. I think we all kind of lived there. They have these rooms in the ICU that are like beds and you can shower. And we got him. We go yoed for a while with the step down unit, and then he would destat and we'd have to go back up or we would start convulsing uncontrollably and have to go back up. I've had to watch my child convulse. I've had to sign paperwork to get a femoral picc line. I've had to argue that he needs a double cannula femoral picc line since he's on tpn. I've had to make a room full of doctors listen to me without swearing or screaming.
[11:40]
Heather
How long was your hospital stay?
[11:42]
Amelia Lawrence
10 weeks.
[11:43]
Heather
10 weeks. So much of what you said, I know those feelings and those emotions, right? Like, I know, you know, so Jake was born healthy. He had a seizure out of nowhere at eight months. So a little bit older, like a little bit bigger, sturdier, stronger. Those things you talk about having to hold down your tears, keep it together, show up. That feeling of, like, you know, you are afraid your child is going to die. And you have to do everything in your power to prevent that and to make, you know. I remember fighting with doctors and, you know, we were at Boston Children's Hospital, so we were, like, in a big pediatric hospital, and it was filled with sick kids, but at Certain points, Jake was certainly the sickest. And I was like, you know, he needs all the attention. Like, I know you got other moms fighting on their behalf, but you gotta make your kid the most important one because you wanna bring him home. I know that fear. And I. I'm always so sad when I know that there's other people that are going through that journey. Cause you're right. Like, you can have all these other horrible experiences in life, but there is nothing quite as tough as watching your little baby hooked up to so many machines and trusting, like, having to trust other people to do things that sometimes you don't even really understand. They would have to put Jake into, like a coma. Like a medically induced coma. Cause it was like, you know, let's. And I'm like that. Like, he's finally breathing on his own and doing these things. And now we're putting him into this coma so that his brain can rest. But it's hard to trust. So he was there from two weeks to like 12 weeks. Is that about right?
[13:18]
Amelia Lawrence
Yeah.
[13:19]
Heather
And then you came home and. Right. And you come home. That's also a hard adjustment. Right? Cause you come home to such a different life than you left.
[13:27]
Amelia Lawrence
Well, we came home and his dad and I made the choice to split. Being in a marriage or engaged or any kind of relationship and parenting with a child that has any extra needs, let alone profound life threatening disabilities. I'm very fortunate to have met someone that has a relative with Angelman's. My husband is very, very, very used to this life. You know, it's a lot. So when we got home from the hospital, it was an adjustment with his dad helping me with, like, what are we going to do with insurance? So we had to do all that and like, figure out how to move this big heavy equipment because I couldn't do it.
[14:11]
Heather
And this piece of us as moms of medically fragile kids, we tap into this piece of us that we did not even know existed. Right. Like, so how old is Leo now? He is seven.
[14:23]
Amelia Lawrence
He turned eight yesterday.
[14:25]
Heather
Turned eight yesterday. Happy birthday, Leo. So if you go back, you know, nine, 10 years and think of yourself, you never would have thought you had it in you to like, go up against the principal or to talk to these doctors or battle with insurance. Right. Like, I know I didn't. Like, I always, you know, I had some skills in these things and I was educated and articulate and blah, blah, blah, blah. But pre Jake, I had no idea I had it in me. It kind of makes us badass. Like I, like, like, you know what I mean? Like, yeah, it's like our superpower, our job is keeping any mother's job, right? Is keeping your kid alive and safe and all this stuff. But the stakes are so high for us and for you as Leo's mom. You're driving, your kid's having a seizure. Like these are split second things that you have to react on. Cause it's life or death. It's literally life or death.
[15:14]
Amelia Lawrence
While the 4 year old's in the car.
[15:16]
Heather
While the 4 year old's in the car. Like, it's just. And it's not like, oh, that is this unusual thing that happened once. I'm sure these type of things happen all the time. I wanna hear though, because when you were talking in the beginning and this made me a little envious, but you rattled off so many cool, adaptive things. You talked about a triathlon that Leo participated in. You talked about adaptive rock climbing. Like, what? That's awesome. So can you share a little bit about a. How you found that? Like, is that specific? Like Tennessee specific?
[15:51]
Amelia Lawrence
Yes. So the first thing that we found was Miracle League Baseball. And that's through Murfreesboro Parks and Recreation. As far as I know, that's available in a lot of states. What they do is pair athletes that are children or adults with peers. They even have the fire department, lots of local high schools, the police department, and they come out and they play these games. The kids get to have their face on the jumbotron, they get to have people cheer for them, and they get to pick their theme song. And so anytime they go up to bat, they get to do their little dance or their strut. And it's right next to the field where my daughter can play soccer or be on an inclusive playground. There's equipment like a swing set where if she wants to swing next to her brother down a zip line, she can do that after his baseball practice is done. Just like if my son had never had a stroke or a brain infection, if we were taking my 8 year old to baseball practice. You have no. Well, yes, you do. How jealous did you feel of other moms saying, oh, we're going to the ball field. And I can say that now.
[16:59]
Heather
I mean, it's so awesome because it's. You know, I used to have to like, get someone who I trusted to stay with Jake or someone that would take Ethan. Frankly, that sucks. Right? Because sometimes I just wanted to go with Ethan and watch my typical kid, like, do typical kid stuff. Like, you just want to do that.
[17:18]
Amelia Lawrence
And not feel guilty.
[17:19]
Heather
And not feel guilty. And not feel scared. Right. Like. Like. So the fact that that exists, I think, is just, you know, we talk a lot at the organization, and I just talk a lot about, like, how it's not always what's best for the child. It's what's best for the whole family, you know? And yes, of course, like, Leo is at the center of that. Everybody wins when that happens. Right? Like, you win because you can be a mom with both kids, needs being met at the same time, and your daughter can hang out with her brother and not have it be, like, weird or awkward or, like. Like she's giving something up. I love that. I think that is so awesome.
[17:55]
Amelia Lawrence
So Catalyst Sports, they do. I think they might be exclusive to Tennessee. They do adaptive mountain biking, adaptive hiking, rock climbing, camping. They have so many extra volunteers that understand, like, this child is primarily nonverbal. You need to give him a minute. If he gets scared, get down on his level. If he just decides he doesn't want to rock climb that day, don't push it. Yeah, yeah. They've been known to play freeze tag and harnesses and run back and forth at the rock climbing gym or play peekaboo behind the obstacles.
[18:30]
Heather
It's, like, magical, almost, like. Right. And I say this to people and not everyone understands, but it's like, you don't want to put your kid, like, in a bubble wrap. Like. Right. Like, you want your kid to have the same. Not the same, but have those experiences.
[18:44]
Amelia Lawrence
Well. And the cool thing about the triathlon. So the Try My Best Triathlon is an event put on by Vanderbilt Children's Hospital out of Nashville, Tennessee. So that's the hospital that he was born at that treated him, that we actually see our developmental team with. And so they have, like, a specific team that goes and hunts around for resources in the Tennessee area and kind of the whole Southeast. And so after the triathlon's over, they have a big barbecue contest slash resource fair. I think last year there was about 40 different, like, vendors and, like, people doing balloon animals and face painting and science experiments. And then there was these tables of, like, sled pred. Ice hockey. It's wheelchair adaptive hockey. There was the Catalyst Sports. There was an adaptive ice skating. So many of those people are parents that were passionate about stuff and got kind of irritated that it wasn't available for their kids and that. That's kind of like where my husband and I are. Before we got the stairlift, we were looking at different chairs to go up and down the Stairs. But my husband decided we needed a stairlift, so we bought a stairlift. We have an adaptive backpack called a freeloader, and then my aunt bought it for us. But it's a. Like, a backpack carrier that has a motorcycle seat and a harness across the. And leg stirrups, and it holds up to 80 pounds.
[20:09]
Heather
Okay.
[20:10]
Amelia Lawrence
And then the next step up from that is called a We carry Kevin backpack, and that goes up to about 120 pounds.
[20:16]
Heather
So you got your next stage ready? Yeah.
[20:18]
Amelia Lawrence
Yeah. And then, like, through all of these little, cool niche communities, my. My personal hobby, that just, like, makes me feel amazing because I. I can't take away what happened with my kid. I can't fix that. But I can make it less scary for other moms that are sitting in the developmental clinic with the whole, you know, the fresh diagnos. If I had had somebody walk up to me and be like, hey, do you want a glimpse into your future? It's actually pretty fun. I think it would have taken the sting out. Some of your episodes kind of, like, talk about how you channel your grief and, like. To say, I don't grieve for what could have been would be an absolute lie. I would love it if I could hear my son sing Jingle Bells or hear the way my name sounds or the way his name sounds, or I get glimpses on his good days, but they're very, very small, very quiet glimpses.
[21:13]
Heather
You learn how to see them more and more over time. It's almost like it's a skill. But I love what you just said, because we've talked about it on the show before, but it's almost like we become the people that we wish we had. I had Ethan first, and then I had Jake. And I don't know. I was 32 or 33 or whatever I was. But everything I knew about life for those first 33 years in a split second was just different. The way my path in life, like, the future that I thought I was gonna have, the parenting style, I thought, like, all of that stuff is just gone, and you're just a deer. Or I was a deer in headlights. I was like, what? And. Yeah, but I think with time and like you said, you figure it out. You lean into it. You, like, figure out what you need to do to be brave and to be there for your kid and to give your kid the vision, very best life possible. And then if you can channel that and figure out how to help someone else, it just makes it. I don't know. And I love what you Said you, like, if you see a glimpse into your future, you're gonna. You're gonna love this life. The life is hard, you know, and it's. But it's also beautiful. It's always, like, an ongoing theme in the show. And, you know, my husband kind of rolls his eyes sometimes because I say it all the time. He's like, yeah, yeah, yeah, I know, Heather. Two things can be true, but it is, right? Like, it can be insanely hard, but so beautiful, too.
[22:29]
Amelia Lawrence
I was a completely different woman before I had my son. I was all gas, no break, live fast, die young, that kind of lifestyle. Hopping on the back of motorcycles with boys I had just met. And then I had my son. And I will never forget, actually, after his SDR surgery.
[22:47]
Heather
What is SDR surgery?
[22:49]
Amelia Lawrence
So it's a selective dorsal rhizotomy. It's a spinal surgery. And they go in and they clip the. The little nerve endings that are causing leg spasticity. And so we got really lucky and got that surgery done. CP gets worse as you get older. In my son's case, he has a type of CP called spastic quad cp, and so it affects his legs, his arm, his torso, his mouth. And so as you get older, things tighten up. Your epilepsy gets worse, and so hitting it hard when you're young is really essential. So. You know how I said I used to be really timid? Well, the first person I kind of had to stand up to was a doctor, a nurse, and then my son's own dad, he wasn't so sure about the surgery, and I had to be.
[23:34]
Heather
Like, no, for real, we're doing this. Yeah. Like, we're gonna get this done. Yeah.
[23:38]
Amelia Lawrence
Didn't give me much pushback, but, like, being like, no, for real. Research it. When we got done with surgery, I think my ex was on the way up to the hospital, so he wasn't in the room for this. But my son, his catheter bag had, like, occluded. And so all that needed to happen was I needed to move a valve on it. But they had a nurse come in that wasn't familiar with aac, which is the speaking tablet. Also didn't speak sign language. I don't think she knew I was in the room either. So she came in and started messing with the bag, and it was affixed to my child's leg with surgical glue or some kind of tape mechanism. And he started screaming, and she didn't stop. And so I. I came flying out of that bathroom like I was going to eat Her.
[24:20]
Heather
Yeah. You did? Yeah.
[24:21]
Amelia Lawrence
It was just like, I'm so sorry, I'm not a nice woman and you need to step back, get the hell away. Yeah, you know, younger me would have been like, oh, I'm sorry, could you please. I'm sorry to bother you.
[24:36]
Heather
You can rest easy kind of knowing that you will do what it takes. I love this piece of the equipment and the places we can go. So I want to like, I want to segue a little bit into like freedom concep. So from what I know about them is they are over 30 years old and they started because someone made a request to build a bike for a kid with cerebral palsy. And this group of people did it. It was a huge success and they kind of realized they were onto something special. It has then evolved, you know, over 30 years into a company that really customizes products for kids like Jake, for kids like Leo, for kids all over the the world, I think, you know, I mean, I know they're based out of Canada. They're kind of like these modern day problem solvers. Right. Like they see everything we've just talked about. They see these kids that need extra support but want the same life that typically abled kids have. And I love that they exist for that reason. You have a bike and a chill out chair, right? That's correct. Yeah. You said earlier that Leo participated in that triathlon and he was like one of the few that brought his own bike.
[25:42]
Amelia Lawrence
Yeah, he actually has done like I think five or six of the triathlons. Our bike goes to every single one of them and the bike actually will grow with him. So. Okay. We got this bike because kind of a horrible situation. So we found online that there were these adaptive bikes called amtrikes. Yeah. We have a friend that lives in Mexico. She had left hers, I guess with like a nanny or somebody in Virginia. I asked my husband and someone else to go and try to pick it up. That bike turned out to be completely rusted out and not usable. So. Okay. In the same city was another one for $450. So one of my mom's friends went and picked this bike up. Okay, we get this bike home and it is a just tetanus case waiting to happen. The spokes were rusty and pointy and it just. Absolutely not. I went on the Murfreesboro Marketplace and some girl had tagged me in a couple of these bikes and one was really rusty, one was an adult sized bike, and then one in the description said it was a different bike than what it was. So I went ahead and started a GoFundMe to pay for this bike. Paid $850 for this bike. Got the bike home. The bike was my sized.
[27:02]
Heather
Oh, Jesus.
[27:03]
Amelia Lawrence
Meant to go for a five year old. I got a call from another one of my friends. Hey, I need you to look up this company called Freedom Concepts. I think I found a bike for your kid and I think I can find a way to pay for it. I said, I'm not getting my hopes up, but okay. She said, okay, just call this lady. The worst thing she can say is no. So I called and I said, hey, I have a kid with cp. This is going to be my third attempt to get him a bicycle. I don't know what to do and I can't afford to start a new GoFundMe. And because everyone's going to think I'm.
[27:34]
Heather
Greedy or think you're scamming them or like something. Yeah.
[27:37]
Amelia Lawrence
And she was like, honestly, I think I can help you out. I'm going to send you a list of a few organizations and we'll submit an application to them and we'll see what percentage they'll pay for of the bike. And if we can't find somebody, we'll look at a second list and we'll figure it out. But she never said, oh, no, man, this is a definite no or a definite yes. It was, we'll figure it out.
[28:01]
Heather
And I want to jump in because I do think that's what makes Freedom Concepts such a special and unique company. Because that is exactly what they do. How many times in our life do we call and we're told, no, you can't do that. No, it doesn't qualify. No, we can't help. Like, in a world of no's right, they are. Now I'm being cheesy, but they are a yes.
[28:21]
Amelia Lawrence
And like, it's. You know as well as I do you just brace yourself for no. But to hear me describe my child's profound medical issues and then have someone on the other end of the phone not seem rattled and not say, I'm so sorry, it was, how can I help? Oh, well, I don't have the answer to that right now. Or I think I might have the answer, but I don't know if I'm right. We can figure it out.
[28:45]
Heather
I love that.
[28:46]
Amelia Lawrence
It took about three months, but through that whole process, that company checked in on me, texted me, emailed me, asked me if I had questions, asked if I felt good about the process, asked if I had any questions about sh. Of the bike. Once the. The bike had gotten shipped out, they checked in to make sure we were happy with it. They still check in on us to make sure we're okay. They told me what to use on a stain on the bike. Like, they kind of feel like family.
[29:13]
Heather
Like they're real people and they care about. Like they know that we're real people and they care about us.
[29:18]
Amelia Lawrence
They bothered to learn my kid's name, which is a big deal. You know as well as I do my kid to a doctor is his diagnoses, not Leo. But to this company, he was Leo and he likes dinosaurs. And that was an important detail for them to pay attention to, to treat him like a little kid.
[29:34]
Heather
Did they put dinosaurs on the bike?
[29:36]
Amelia Lawrence
Yeah, yeah, he has a squeaky dinosaur on it.
[29:38]
Heather
So I. One of the things. And I didn't know this because typically, like, through Jake's hell from heaven, when we buy bikes, we're sort of buying more standard bikes because I didn't know they did this. And in one of my early conversations with them, as we were talking about working together, they were like, no. Like, we love all that information. Like, if you can say that your child likes dinosaurs or spongebob or like, whatever, they make an effort to incorporate that. You know, sometimes the special needs equipment is so special needs looking. Right. Like, it's like big and ugly.
[30:13]
Amelia Lawrence
Grandma's walker.
[30:14]
Heather
Yeah. Like, it just looks like, ugh. Instead to, like, provide for Leo, a cool kid's bike. Like, I love that. Other kids look at these and they're like, oh, they're cool. We like them. Or like, look at it. And that's also so special. Right? Because otherwise it's not just this clunky, institutionally looking thing.
[30:33]
Amelia Lawrence
It's less like a cage and more like something to actually be helpful.
[30:38]
Heather
So he uses this bike to do triathlons.
[30:42]
Amelia Lawrence
Well, between that and it's got a hand steering part on the back. So if he's having, like a bad eye day or if he's just stressed out and wants to feel what being on a bike is like, but doesn't really have it in him to steer the bike that day, I can steer it from behind him. It's got a handle where if I want to run full force and let.
[31:03]
Heather
Him feel that feel like the wind and the whole.
[31:06]
Amelia Lawrence
I can do that. Yeah. The handbrake on the back is really nice because of the CVI and the epilepsy. I know as long as my hand's on that, I can let him run wild and do whatever But I've always got that to make sure he's safe. That's a giant thing because the other bikes that we trialed, that brake wasn't strong enough to stop immediately and you need a gradual stop.
[31:28]
Heather
And that's so great for your daughter too, right? Like, for her to be able to be like, hey, I'm doing this with my brother. Or look at my brother's cool bike. Like, I love it. I think it's so great. One of the things that we at Jake's Haul from Heaven, purchase more. And it's honestly this piece of equipment that I'm so mad it didn't exist. And maybe it did exist, but I didn't know about it. For Jake, the chill out chair is so cool. Leo has a chill out chair. Tell me about it. Like, does he love sitting in it?
[31:56]
Amelia Lawrence
He's currently sitting in it playing as a Nintendo Switch. We homeschool him now because of the epilepsy. Those seizures take a really big toll on Leo's body, just like the CP does. But it makes it really hard to sit up. What most people take for granted is having a nice stable airway. And so for kids like Leo that have a difficult to clear airway because of shallow coughs, because of a stroke or something like oropharyngeal dysphagia, where we have a lot of drool happening, it's rough. So that chill out chair has a five point harness in it that kind of holds him more upright. And so even if he were to have a seizure, it's padded on both sides. And so if he were to smack his head on it, he wouldn't sustain a head injury. We can do breathing treatments for him in and you can lean back because it's kind of set up like a little. Almost like a how a little bitty car seat for like a baby set up. But it gives them dignity. So it's not like, oh, you're a little baby in this car seat. It looks like a lazy boy.
[32:58]
Heather
I was just gonna say they look like lazy boys.
[33:00]
Amelia Lawrence
It's like a tactical lazy boy, basically.
[33:03]
Heather
It makes such a difference. Like, and it makes a difference for your whole family too, like, because then they're sitting in a chair that looks good. I feel vain when I say things like that, but it matters. Like, it's important.
[33:14]
Amelia Lawrence
But for his dignity, like, the chill.
[33:17]
Heather
Out chair is really cool in so many ways. One of them that I didn't know about was that each one is made from scratch for each user. So it's totally customizable each of the accessories are for each individual child, so you are able to get what you need from the chill out chair. If you need a tray, there's a tray available. They will build it with that. If you need a headrest, they've got that.
[33:39]
Amelia Lawrence
He does video calls with people and he's willing to. His chill out chair is set up as a feeding chair as well. So it's got the tray attachment that swivels. It's given him the ability to control that swivel because of the way the cranks are that control how much it swivels. He can use that because Freedom Concepts cared enough to look at his medical record and say, okay, which side was most affected by this stroke? We'll put all the controls on the side that is stronger. What does he need as far as, like, leg and hip support? So the people at Freedom Concepts looked at all of his medical stuff, talked to his physical therapist, and then worked with a specific DME company to have someone physically come out, look at Leo, take measurements, and then come back to Freedom Concepts and say, okay, here are your options. This is what would help him with this, this and this. We think from a medical standpoint and a quality of life standpoint, this would work best. Here are your options with this. It was amazing. Like, they literally said, oh, no, you don't have to worry about a thing. We've got this amazing medical device that your child can eat in. I got to sit down and eat a meal with my son.
[34:47]
Heather
Actually, most people listening to this podcast will understand the value of what you said. Right? Because, you know, I mean, I certainly, like, it's almost like your child. When you have a child with these kind of CP and disabilities, they're in a different chair or they're in a different room, or you're eating and then you're feeding them. But when you can all be around a table and share this space together, it's beautiful. Like, it's just. And you don't know what's missing until you have it back a little bit. So, you know, I mean, like, people could listen to that and be like, oh, what's the big deal? But it's a huge deal.
[35:21]
Amelia Lawrence
I've never actually. Unless someone else was feeding him and I was inhaling my food really quick. I've never actually gotten to just sit there and share a meal with my kid. And our first meal was a peanut butter and jelly sandwich. It makes you really emotional again because, you know, a little bit of a crybaby. But I made a peanut Butter and jelly sandwich with some jelly my mom had made, and so that's his favorite jelly. And we had been trying so hard to get him to eat a sandwich. Leo also has a sensory processing disorder. That chair's kind of turned into his safe space, though, because the harness puts enough pressure on him. It's got pads on it. Yeah.
[35:57]
Heather
But he can feel the input. Yeah, yeah.
[35:59]
Amelia Lawrence
So it puts enough pressure on him to let him know he's safe. And he's like, you know, not gonna fall off the chair if he coughs. If he does need to cough, he knows he's safe. And then that tray, he can put it in front of him, but if he's having, like, an ick day where he doesn't want to see the food, he can push it off to the side and take a breather. That's a game changer. And so sitting at the table with my son, who asked me to cut this peanut butter and jelly sandwich in half and eat it with him, I'm like, yep, that's what we're doing.
[36:28]
Heather
You're like, I'm doing it.
[36:29]
Amelia Lawrence
I got to watch my son's eyes as he tasted the jelly, tasted the peanut butter, chewed the bread, and felt safe.
[36:38]
Heather
It's like a place like Freedom Concepts that gives you this ability to have these moments that are so. After. I don't know how long ago that was, but, like, you still get emotional about it because it's a huge moment for you and for Leo, for someone.
[36:52]
Amelia Lawrence
Like me or you. If I'm like my son who had a stroke, who I had to make difficult decisions about where I would bury him with a social worker from the hospital. This company has given me the ability to go and run and ride bikes with him and go chase an ice cream truck to get a popsicle. My little boy got to. With his sister, got to chase an ice cream truck and get a spongebob Pop.
[37:18]
Heather
I mean, I have chills, right? Like, those are. And they're moments you never thought you would have, and now you have them, not just once, but, like, repeatedly. Like, this is part of your life now.
[37:28]
Amelia Lawrence
I really wish that more people knew about Freedom Concepts because, you know, I. I don't know if you can tell, but I'm an info dumper. So when Leo went to public school, I was like, I have all of these pamphlets. They're like, what? I'm like, I have an obnoxious amount of pamphlets to give you. Here's how you get a bike. Here's how you get someone to help you pay for it. Here's how you get a chair. All of these things that were available in this brochure I wanted to make sure other parents knew about. There's not a manual for this.
[38:00]
Heather
No.
[38:01]
Amelia Lawrence
No one tells you, hey, if you have a supportive chair, your child that struggles to eat and is scared of choking, they're going to feel safe and they're going to want to try to eat more. If you can get them supported, like.
[38:14]
Heather
And you just hit on this. Like, people don't know. Right? Like, and you don't even know in the beginning. You don't even know what you don't know. So you don't even know what you want, really. Right. Like, you don't even know. The more I learned about Freedom Concepts, the more I wanted to do, like, an episode like this. And when I was so grateful when Sydney introduced us. Cause she's like, I kind of feel like Amelia. Like, and you guys, you're gonna. Like, you know, you're gonna speak the same language. And we do. And it's. So. One of the things I've loved about this podcast is that there's people like us all over. And it used to feel. It didn't used to feel that way to me, but now there's families like mine, there's kids like Jake, there's kids like Leo, like. Like, it makes you feel less alone, and it makes the world feel, like, smaller and better and tighter. And then you get someone, like, Freedom Concepts working with us, not against us. It's just good stuff.
[39:03]
Amelia Lawrence
I don't know if this makes any sense, but it feels like Freedom Concepts. All the other DMI companies I've had to work with for my son. Listen to the doctor first. They want to talk to the doctor. They want to talk to the therapist, because that's the expert and that's the person that knows everything. And Freedom Concepts wanted to hear from me and my kid. They wanted to talk to us about what we needed first and about how they could help us get it. All these little nitty gritty details that nobody's ever cared to ask because they're not important. With his diagnoses, the dinosaur thing, or the fact that it's easier to use his right hand than his left hand. I didn't have to ask for any of those things. I didn't know that stuff existed. But they had an expert who was like, yeah, no, even if your child's completely unconscious, this bike is still safe for them. I'll make sure of it.
[39:49]
Heather
I mean, and that sort of wraps it up perfectly. Right? Like, it's. And. And it was interesting because in this show, like, I can't get on and talk about things that I don't actually believe in because it's just not my vibe. It's not what I do, you know? Like, that's just. It's not who I am. But this is so easy to talk about. And it's funny because I. That wasn't one of my, like, talking points, but it's almost one of the most important things, right? Because you're absolutely right. Our kids are defined by their diagnoses, and they're defined by who their doctor is. There's so much more than that. So to have a company that takes into consideration what really matters and what is unique to our child not is. It's just awesome. Amelia, I have loved talking with you. Thank you for being on the show. Thank you for sharing so much of your world with my audience and with me.
[40:36]
Amelia Lawrence
Yeah, no, thank you for caring about our world and, like, all the other people in our shoes.
[40:43]
Heather
Thank you for listening to A Place of Yes, Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend. It would make a world of difference if we could just reach more people and share the work that we do and the stories we want to tell. Thank you so much for watching.