Part 2: Life Beyond Illness: Jen and Alex Discuss Resilience, Advocacy, and Normalcy with Guests Jen and Alex

Dirty Skittles [00:00:01]:
In this episode, we got to talk about one of my favorite charities in this entire fucking world called Give Kids The World. What better way to show we care for each other than to donate to a good cause?

G-Rex [00:00:12]:
It's such a great organization. They really help the families and their kids celebrate. They bring smiles to these wonderful kids' faces.

Dirty Skittles [00:00:20]:
I really do love this charity. Give Kids A World hosts kids with critical illnesses and allows them to spend time with their families on a weeklong vacation in Orlando, Florida.

G-Rex [00:00:30]:
Give Kids The World focuses on making every day the best day ever. Please consider sharing your love with this organization by going to gktw.org and donating. You'll be able to find a link to donate in the show notes.

Jen [00:01:01]:
I remember we he was about, I think, 12 or 13, and we were at the endocrinologist. And the endocrinologist said, you know, okay. Well, we could do this or we could do that or whatever. And he got up At 12 or 13 years old and said no. I'm done. Good. Good. I'm not doing anything else.

Dirty Skittles [00:01:18]:
What do you say as a parent to that when that happens?

Jen2 [00:01:23]:
You know, you have a you have

Jen [00:01:24]:
a struggle. You have an internal struggle because you're like, okay. Are we gonna continue with this? Are we gonna just, you know, keep trying to fight it? Is this the right decision? I mean, he's not cognitively an adult. He doesn't understand, you know, the consequences of making this decision. But, you know, we did go have we did have a conversation. Him and I went out for a date and, had a really deep conversation and just said, you know, I feel like, God made me the way I am, and I'll deal with it as it comes. I'm not going to continue to go because at the time, it felt to him like 1 doctor would turn into 2, and then 2 turn into 3, and then 3 turn into 4. And he's like, I'm just gonna deal with it because that's that internal fighter, that he is.

Jen [00:02:07]:
That he was born to be. Yeah. So, you know, you you ponder it a little bit, and then you're like, alright. Alright. We're we're done with that. But what we are gonna do is stay. You know, you kinda you you give and take a little bit because he starts to be able to advocate for himself.

G-Rex [00:02:25]:
Yeah. That and that's what I was just gonna ask is, like, how did you teach him to be able to advocate for himself? Because, you know, as a parent, You know, you wanna make sure that he's making smart decisions. Right? But at the same time, it's his body. Right? And, like, You can only take so much crap of poking and prodding. And I yeah. I think I'm interested to find out, like, how you How you let him advocate for a shot?

Jen [00:02:57]:
So I included him in the decisions. I I As he got older, I realized my role was changing. My role was not, you know, the this is what we're doing, and you will abide by it, You know, when he wasn't old enough to help make those decisions.

Jen2 [00:03:12]:
You know? It was it was very much the okay.

Jen [00:03:16]:
Here's what the doctor's saying. What are your thoughts? I wanted him to know that he had a voice as well because this is I mean, realistically, it's something he's gonna have to live with the rest of his life. So and a mom's not gonna always be around, so he needs to learn how to advocate for himself. So I just included him in the conversations. I felt that it was it was very important, and he's he started to stand up and and say, okay. You know, we'll do this, but we're not doing that.

Dirty Skittles [00:03:46]:
You know?

Jen [00:03:46]:
So that was really, really good, I think. It was a good mind shift, you know, for him too. And it wasn't something that I consciously did. Like, I was like, oh, I'm gonna be a good mom, and I'm gonna include him. It was something

Jen2 [00:03:58]:
no. That is not how it happened at all. In the real Alex form, he made his point

Jen [00:04:08]:
very well known to everybody. Yes. Yeah. Absolutely. He's like,

G-Rex [00:04:15]:
hell no.

Jen [00:04:16]:
We're done. Exactly. Exactly.

G-Rex [00:04:18]:
Deuces. I'm out.

Jen2 [00:04:20]:
I'm out.

G-Rex [00:04:20]:
Let's go to lunch.

Jen [00:04:22]:
Exactly. Just like that.

G-Rex [00:04:25]:
I'm juggling. Give me food.

Jen2 [00:04:27]:
Yeah. Yes. Ice cream, please. Yes.

Alex2 [00:04:31]:
How did that decision, him advocating for his self, change what what happened next?

Dirty Skittles [00:04:36]:
Was there any Difference in how he was living his life or

Alex2 [00:04:41]:
how he had to go see more doctors. Like, did anything come of it?

Jen [00:04:45]:
Yeah. We dropped off quite a few of the specialists, and they have never turned around and gone back. I won't Let him, give up his immunologist. He knows that that was the only thing I was not negotiating on, because, you know, he's such a phenomenal doctor. It's funny story. We went to Orlando one time because, you know, like you, we do do a lot with Give Kids The World and Make A Wish. We do quite a, Quite a bit. They've make Make A Wish has sent him, like, to several places.

Jen [00:05:14]:
You know, the Panthers game, stuff like that, you know, that he can go speak Kind of on their behalf and all of that stuff. It's been really a phenomenal relationship, and we try to get up to Give Kids the World a couple times a year And volunteer our time and give back, and, it's just it's been absolutely fantastic. He he loves Loves, loves, loves Give Kids The World. So we we try to, include him in His own health journey. Right? And allowing him to make those decisions and and such. So when he said we're gonna go up and let's go volunteer, and we And we did. He wanted to go to I can't think of the name of it, but it's where you there's a place where you go and it's like all mid it's called medieval times.

Alex2 [00:06:02]:
Mhmm.

Jen [00:06:02]:
That's what it is. You go and you eat with your hands and then, horses are battling each other and there's a it's indoors And there's a bunch of, like, sands.

Dirty Skittles [00:06:12]:
Mhmm.

Jen [00:06:12]:
So for somebody like him, I'm like, oh, well, this sounds like a trip to the hospital.

Jen2 [00:06:17]:
You know? Okay. So where are we going? Let me think. Celebration? Okay. They know you. They've got all your information. We're good. Right? Like, this is how you plan in

Jen [00:06:27]:
your head. We get there, and his we're waiting to get in, and his immunologist was standing in Mine with his family.

Dirty Skittles [00:06:36]:
Wow.

Jen [00:06:36]:
And I was like, oh, this is perfect.

Jen2 [00:06:39]:
I was like, we're sitting with you. So something happened. That's your responsibility. So we did. We sat with him and his family

Jen [00:06:49]:
the whole time, and he ended up ended up doing well, but his immunologist moved made everybody move their seats as far back as possible. Like, we moved all the way to the back. You know? So, yeah, it was really it was just really amazing how that happened. We've never gone back since.

Jen2 [00:07:05]:
Never. But it was it was a great it was a great time. You're trying to venture out. It was like, wow. Look. His immunologist is here. Perfect. So I didn't look

G-Rex [00:07:15]:
at my mom like,

Dirty Skittles [00:07:15]:
yeah. This was an accident. Sure.

Jen2 [00:07:18]:
Sure. Yes. He thought I planned it. He's like, I thought I would imagine. Have his number like Oh, yeah. I was

G-Rex [00:07:27]:
like, no.

Jen2 [00:07:28]:
He looked

Jen [00:07:28]:
at me, like, gave me that look, like, sure you didn't plan this, mom.

Jen2 [00:07:32]:
I'm like, I really didn't. I really didn't. So, yeah, it was it was really

Jen [00:07:37]:
a a really good experience for us, you know, to To have his immunologist there, and that's the only doctor I won't allow him to give up, and he knows that. So and he's fine with it.

Dirty Skittles [00:07:48]:
And, he has brothers?

Jen [00:07:51]:
He does, and they don't have it.

Dirty Skittles [00:07:54]:
And they don't have it.

G-Rex [00:07:56]:
And is it is it genetic, Or it is just it is genetic.

Jen [00:08:00]:
It is genetic. Yes. So, you know, obviously, this is not something, you know, we're thinking from Great grandfather or great grandmother and back, but it wasn't something that they tested back then.

Dirty Skittles [00:08:13]:
Like, how do they know?

Jen [00:08:14]:
They wouldn't know. They just thought your kid was sick all the time. Yeah. You know? They they'd have no idea. But, yeah, it is genetic, and the other 2 don't have it.

G-Rex [00:08:24]:
Wow. Wow.

Jen [00:08:24]:
So yeah.

G-Rex [00:08:25]:
I I was just gonna ask, like, how's this relationship with those brothers? You know, because I know that you We've had to place a lot of focus on Alex his entire life. Did did you get any, pushback from the other kids, or Were they helpful in in understanding?

Jen [00:08:46]:
They were I have to say, they were super helpful in understanding, And they have they have really just been, like, 3 normal brothers. And the point that he soaks up Alex soaks up the attention And says, no. I can't help it. I'm her favorite.

Jen2 [00:09:01]:
You know? Yeah. That is still to this day, the relationship that they have. Still to this day.

G-Rex [00:09:14]:
I can do anything I want. I am mom's Bailey.

Jen [00:09:18]:
Exactly. Absolutely. There was one time, we were here and we had to he just got sick super, super quick again, and He was getting sick from the front lawn, and I I knew we didn't have time to drive him. And, we called rescue, and rescue came and picked him up. And I was driving in the front of the ambulance because, you know, they don't let you in the back with them. And so, I said, you know, can you please take us to, our local level one hospital, Joe Di and, they're like, no.

G-Rex [00:09:49]:
We won't make it. Oh.

Jen [00:09:51]:
And I was like

G-Rex [00:09:52]:
Oh, wow. Oh,

Jen [00:09:53]:
Yeah. That was the moment I realized how bad it was.

G-Rex [00:09:57]:
Holy

Jen [00:09:57]:
shit. How every ER has, a room that has its own, You know, ventilation, everything like that. That's Alex's room. He calls it his room. Like, that's where he goes when he's in the hospital. Yeah. But the idea is to get him in that room, get him what he needs, get him stable, and get him out.

Dirty Skittles [00:10:13]:
Right.

Jen [00:10:13]:
Because the hospital is literally the worst place for him. Yeah. Because everybody there is sick. So We were in this is that trip. We were in there. We were in the room. There's he had, like, so many doctors and nurses around him, and he just looked at me because he's like, are they gonna take my blood? Are they gonna give me an IV? And I was like, buddy, they are. They are going to.

Jen [00:10:36]:
I said, but do you know how You always say, you're my favorite. Just keep thinking about that because I am. Right? I'm like, yes. You are.

Jen2 [00:10:50]:
Let me tell you. Like, when we got home from the hospital that night, He came in yelling at his brothers. Mom admitted it. Mom admitted it. I'm her parents. So that is how the boys get along. They're like, no. She was just she was lying to you because you were in the hospital.

Jen2 [00:11:09]:
That's what so that's how they get along. Normal.

G-Rex [00:11:12]:
At least at least they don't sugarcoat it. They're like

Jen2 [00:11:15]:
Oh, no. Fire. Exactly.

Jen [00:11:19]:
She lied to you because you were in the hospital. That's why.

Dirty Skittles [00:11:22]:
Oh my word.

Jen2 [00:11:23]:
Yes. How do you how do you deal?

Dirty Skittles [00:11:28]:
Like, do you have therapy? Like, how are you getting through this? Because just hearing this, I'm like, I I can't imagine because you seem so happy and, like like, not even like, just, Hey. This is what we're going through. Like, very healthy in that mindset. And I like, I'm just curious how how have you gotten to this point?

Jen [00:11:51]:
Yeah. So, I did. I did actually go to a therapist for a long time to help Walk me through it. You know? Like I said, my friends, my family, super supportive. Everybody was there. But for Me and I, you know, I can't speak for others. It was great to talk to somebody that didn't know anybody. Yeah.

Jen [00:12:10]:
You know, to get that outside objective perspective. So not only did I have a therapist for me, but I also had one for him. So that way he could do the same.

Dirty Skittles [00:12:21]:
Yeah.

Jen [00:12:21]:
So we both had therapists for a very long time that really helped us, you know, see the positive and and just stay, you know, grateful For what we do have, you know, none of us ever know, right, what's happening. Like I said, we do go back to Give Kids The World, and that Fixes your perspective very quickly. Yeah. It really, really does. So, you know, we just try to stay in the positive. There's there are times that, you know, it does It dark.

G-Rex [00:12:51]:
Yeah.

Jen [00:12:51]:
It does get really tough. Like, you know, an example in 2020 when COVID hit, it was that was tough. That was tough because, so it was like, oh gosh. Like, just a regular cold. Kid is is life threatening to him. Yeah. Now this and we didn't know anything about it other than so many people were dying.

Dirty Skittles [00:13:13]:
Yeah.

Jen [00:13:14]:
You know, that was that was very, very, very difficult. But, you know, we were able to see his immunologist virtually. He kept us informed to what was going on, and We had to create an entire plan. So if he were to get COVID, you know, try to get to this hospital, This is what they need to give him. They will reach out to me. I will be there. It was a whole plan. Yeah.

Jen [00:13:42]:
And you have to update the plan as the strands change, so it's not just a one and done. So We we were able to stay positive because we would try to find the positive. So for me, it was the, wow. Look at this. Adults finally learn how Wash their hands. Like, this is amazing.

Jen2 [00:14:06]:
So I felt at

Jen [00:14:06]:
the same time, although it Was a difficult time for all of us. I felt like let me look at the positive. Right? The world is probably the cleanest it's ever been. People are actually washing their hands for 20 seconds now. You know? So you may have the typical things in place where he knows, like, he can't touch elevators. He can't touch, you know, escalator handles, all of that kind of stuff that You just can't. It's just too many jokes.

Dirty Skittles [00:14:34]:
Can he get, like, flu shots and, like, vaccines?

Jen [00:14:38]:
It depends. So the flu, the flu shots, They typically will guess, the 4 strands that they think are gonna be coming. And so depending If, by the time that, you know, by the time that we get fall down here in South Florida, we already know what's Happening for all of the other people

Jen2 [00:15:00]:
Yeah. In the world. Right? Right? Right, T Rex? Yes.

G-Rex [00:15:04]:
So true. It's gonna hit us because word hits you.

Jen2 [00:15:07]:
So Exactly. So we already know how

Jen [00:15:10]:
the flu shot is behaving and what it's really working and not working. So his immunologist will tell us every year whether it's worth the gamble for him or not depending on how many strand the CDC guessed was correct.

Dirty Skittles [00:15:23]:
Yeah. That's what I was thinking of, especially when you talked about COVID because it was scary for everybody, but I can't imagine literally Being in your position when that happened and and with what there was just so much unknown and, yeah, people are dying. And, like, I mean, It's like the world is closing in. Right? Like, it's like, oh, shit. Like, this is crazy. So did he He got to attend some of his doctor's appointments virtually, but I think you mentioned he had to go and do blood every 3 months. So, like, how did that change with COVID?

Jen [00:15:54]:
So, yeah, his immunologist changed it to every 6 months at that time. It wasn't it just was not worth the gamble of him going there and and getting anything. So he's like, oh, we'll we'll hold off for right now. So, it's it's quite a miracle for him, though. I could tell you he's got a lot of people praying for him because according to his numbers, he should be getting the IVIG every single month. And, clinically, he's doing amazing.

G-Rex [00:16:21]:
Yeah. Amazing. Has Alex had to ever, like, spend the night in the hospital? Mhmm. And, like, how how does that work? Because we all know that hospitals are just 1 gigantic, You know, germ factory.

Jen [00:16:37]:
They are. Absolutely. So they'll try to keep them into the ER, at at 23 hour mark, 23, 23 and a half hour mark in the ER in that room that we spoke about with his own ventilation, etcetera. And then they tried to get him in the actual hospital. Well, you know, obviously, it's a pediatric hospital. They try to get them in the pediatric hospital in same situation, places that are very sterile.

G-Rex [00:17:02]:
And and do the hospitals have more than one of those rooms? Because I can only imagine that there's other kids out there that like Alex, That need to be in that special room.

Jen [00:17:13]:
Absolutely. Okay. I think so, yeah, they do. I think they typically have 2 of them, but, yeah, they are reserved for people, you know, with conditions very similar. And the idea with people like him are to try to get him in and out. But when you can't, they will try to keep him in that room as long as possible, and then they will put the put him, like, on the floor, like, as an example, With the with the cancer patients where there's not a lot of sickness Right. You know, that's going on. Obviously, Again, he's not contagious to anybody.

Jen [00:17:44]:
Everybody's contagious to him, so they just try to keep him somewhere that it's not all of the, all of the diseases floating around.

G-Rex [00:17:53]:
That's crazy.

Jen [00:17:54]:
Yeah.

G-Rex [00:17:55]:
And and, like, so resilient, though. Right? Like

Jen [00:17:58]:
Yes.

G-Rex [00:17:59]:
You know, you think about us, like, when we get Sick. Okay. When I get sick, I'm just a bitch. Alright? I don't know. I'm being have on anybody around me. Like, I don't wanna eat in the fucking soup. I don't eat. So I can't it it's hard for me to fathom being that sick my entire life.

G-Rex [00:18:17]:
Right? And he he's still, like, a productive member of society. And, you know, he he's found his voice, and He's going to school. And Yep. I I man, I commend him on that because if it was me, I think I would've had a a really hard time with that, right, because of being an outgoing person and, you know, wanting to, you know, go out with my friends, go to the movies, you not touch all the buttons. Touch all the shit I'm not supposed to touch. And now, you know, here he is not being able to do that. So I think, like, I totally commend you and The family and and Alex. Like, man.

Dirty Skittles [00:18:56]:
I feel like this is the perfect segue to intro Alex.

Alex2 [00:19:00]:
Hi.

G-Rex [00:19:01]:
Welcome. Hey, Alex. Hey.

Dirty Skittles [00:19:04]:
Now we can talk to you. Was it weird hearing us talk about you? Next. No. Oh, okay. My whole life. Oh, I mean, that kind of honestly, that kind of leads the first question I was gonna ask you is, like, what is your earliest memory?

Alex [00:19:20]:
Oh, man. Probably probably,

Alex2 [00:19:24]:
going to make a wish. I think it was that, My first memory. So Give Kids A World, when I went there the first time, I think I don't know that I remember Most, I was, hanging around the koi pond because I like fish when I was younger. I still like fish. I remember hanging around. I met one of my friends, and I think that was the first memory I ever had over.

Dirty Skittles [00:19:45]:
That's really cool. Yeah. And you had to eat ice cream for breakfast, which, like Yeah. That's one. Complain. What's your flavor of ice cream.

G-Rex [00:19:54]:
Vanilla. Vanilla? That's it. Do you still do do you still eat Ice cream for breakfast sometimes. I think that's a requirement.

Alex2 [00:20:04]:
No. I don't. I have no time for that in the morning.

Dirty Skittles [00:20:07]:
What are your days look like now?

Alex2 [00:20:10]:
Days, wake up, go to school, come back, cook sometimes cook dinner, put the chickens up, do schoolwork.

Dirty Skittles [00:20:17]:
Chickens.

Alex2 [00:20:19]:
Chickens. Y'all got chickens. Chickens? Yes. Chickens. Two hens. Wow.

Dirty Skittles [00:20:27]:
Alright.

Alex2 [00:20:28]:
Should I show my room?

Dirty Skittles [00:20:30]:
Do it. Yeah. See it. Is there chickens in your room? Please tell me. There's no okay.

Alex2 [00:20:36]:
No. It's a zoo.

Dirty Skittles [00:20:37]:
Oh, let's

G-Rex [00:20:40]:
see. This is so cool. Alex, thank you for taking the time to talk to us. We normally just get to talk to the parents.

Alex2 [00:20:46]:
So it was getting wrong.

Dirty Skittles [00:20:48]:
Oh, I like the color.

Alex2 [00:20:49]:
So that's 1 fish tank.

G-Rex [00:20:51]:
Wow. Wow. That's a big fish tank.

Alex [00:20:55]:
Yeah. Yeah.

Dirty Skittles [00:20:55]:
That's huge. That's a wall. That's a fish wall.

Alex2 [00:20:59]:
I got another fish snake here.

Dirty Skittles [00:21:01]:
Oh, good. I thought that was gonna be snakes for a second. I for kids.

Alex2 [00:21:04]:
Oh, no. I have a little bearded dragon.

Dirty Skittles [00:21:06]:
Oh, okay. I can do I can do, bearded dragon.

Alex2 [00:21:09]:
He's my little buddy. Mom loves him. And I got 1 more tank here. It's a mother fish.

G-Rex [00:21:17]:
Nice. Wow. Yep.

Dirty Skittles [00:21:20]:
Very cool. I Would probably kill

Alex2 [00:21:23]:
all of those animals on accident.

Dirty Skittles [00:21:29]:
Yeah. We had a We had a saltwater tank in South Florida, and I I became very attached to we had little shrimp,

Alex2 [00:21:38]:
and they were my favorite thing because

Dirty Skittles [00:21:39]:
they were, like, the little puppies of, like, the Saltwater thing. They would like, we'd hand feed them. It was nice. I loved it. Anyhow, back to Alex. Back to Alex. Alright. So first memory, Give Kids A World.

Dirty Skittles [00:21:49]:
I have a question. Being that young, did you how long I guess, how old were you when you fully started to understand what was happening and, like, what how it was affecting you?

Alex2 [00:22:05]:
Around, 10. Around when I start standing up for myself, it's like, No more doctors. We're on there. At that time, our 12 mom said.

Dirty Skittles [00:22:18]:
Man, I can't imagine. I, like, I cannot imagine. And since since you've stood up for yourself, how has it changed you?

Alex2 [00:22:28]:
More confident. Nice. Not scared of who I am.

G-Rex [00:22:32]:
Yeah. Yeah. Go.

Dirty Skittles [00:22:35]:
I love that. Good job, Jen.

G-Rex [00:22:38]:
Yeah. What a what a good mom. So, Alex, I know that you like, Having this just having this disease and everything, and it kinda limits what you can do. I mean, do you ever get afraid when you're, like, Out with friends or trying something new that maybe you shouldn't be doing that? Does your disease hold you back from wanting to try new things like that?

Alex2 [00:23:07]:
No. It really don't scare me at this point. God has a plan for me. Whatever happens happens.

Dirty Skittles [00:23:14]:
That's

Alex2 [00:23:15]:
I can't be scared of the world. The world can't I'm not scared I can't be scared of the world, or it will crush me.

Dirty Skittles [00:23:21]:
Yeah. I mean, you're further along in that than I think most people. Like, a lot of people are afraid and don't have nearly as many reasons to be. So that's huge. I I have a question, and if it's, like, too deep, you don't have to answer it. But I'm very curious on What is next for you? Like, how far do you think in the future of, like, things you wanna do? Is there a limit, or are you just like, hey. This is what I've got planned for myself next.

Alex2 [00:23:52]:
I'm thinking about, after high school, I think I'm just, Just, take off my grandpa's business, air conditioning.

Dirty Skittles [00:23:59]:
Nice.

Alex2 [00:24:00]:
So I'm a get in trade school.

G-Rex [00:24:02]:
Oh. Nice. Yeah.

Dirty Skittles [00:24:05]:
That's cool.

G-Rex [00:24:07]:
He's he's gonna do that so that he can have more fish tanks.

Alex2 [00:24:11]:
Oh, yeah. I have a lot of expensive stuff already. It's horrible. Addiction.

G-Rex [00:24:18]:
So, Like, Alex, what's the like, and if this is too personal, you don't have to answer. But what's, like, one of the curious things that you've had to go through. But when you came out on the other side, you were like You know, I I I lived I I I lived I can see another day.

Alex2 [00:24:39]:
Probably, it was that one time where I think it was a I had a bad case of flu. That one time scared me. I I just I felt like, I was gonna die or something,

G-Rex [00:24:52]:
and I

Alex2 [00:24:52]:
was I was younger then.

Dirty Skittles [00:24:55]:
Do you remember

Alex2 [00:24:56]:
all of them? I remember that one time when we were at the, how old was I? When now a bad one, and I would start crying.

G-Rex [00:25:04]:
9. Wow. 9 years old, and you felt like you were dying. That that's scary. Yep. Yeah.

Dirty Skittles [00:25:16]:
And then you didn't, so you recover. How do you recover? Like, how do you come to terms with that?

Alex2 [00:25:24]:
Sports and fishing. I used I so I did since I was started when I was 4. Me and my, godfather, my and my grandpa, We we've been going we've been going fishing. That always helped.

Dirty Skittles [00:25:36]:
That's really awesome.

Alex2 [00:25:37]:
Yeah. Yeah. Keep keep me busy.

Jen [00:25:40]:
Okay. Travel. His pulmonologist recommended was that when he were was to start to feel like he was getting sick, take him to the ocean Because that salt pair would help clear him up, and if possible, put him in the actual water. So my dad, his grandfather, and his godfather would start to take him fishing, so he's around that salt air the entire time. So he is that's where he's grown to love fishing. And, obviously, with all the fish tanks, you can see why. Wow. Yeah.

G-Rex [00:26:15]:
Yeah. I was just gonna I was just gonna ask if, like, he could swim because I know, like, for me, with my allergies, I have horrible allergies. The one thing that they always told me, especially when I look at South Ward, is get out in the ocean. Right? Get some of that saltwater in you. You know, Have a humidifier. Do all that other crap. Mhmm. Now that I'm up here in upstate New York, I don't have that, so I use a lot of saline spray.

G-Rex [00:26:39]:
But, I was just gonna ask, like, as a form of a good exercise for him, it to at least get in the water. Right? Work out some of those must always work out some of that anxiety and, yeah, and maybe some sadness too. Right? Like, Trying to figure out, you know, hey. What's my next step? Because this kinda sucks, and all my friends don't have this. And I I just wanna feel warm. So, Alex, that's my question for you. I had to mute you because we, we had double talk. But do you like, how do you deal or if you even do, how do you deal with your anger If you have that towards not being able to do some of the things that your friends are doing or Things that your brothers have done or things that your mom mom mom does?

Alex2 [00:27:35]:
The way I usually do it is probably, like, lifting weights or, like, Or, like, do push ups at night and just save it for later or wait till I go fishing and release it there on the ocean Or, what else? Or I just sometimes, I just hold it in too much, and I break down one day. That's really it.

Dirty Skittles [00:27:56]:
Yeah. Do you stop yourself from doing the things that you wanna do, or do you Go for them.

Alex2 [00:28:06]:
I I can I do what I have to do? At this point, I just kinda have joy life the best I can. So I'm nothing's gonna stop me. So and I was and I was trying to be, considerate of other people's time too. Yeah. And I try to help around the best I best I can.

Dirty Skittles [00:28:23]:
Yeah. Is there anything that, like, you wanna do that you either can't or haven't tried yet?

G-Rex [00:28:32]:
I don't know. Please don't say please don't say skydiving. Don't say skydiving.

Dirty Skittles [00:28:35]:
Think he's I was like, I bet it's not getting a tattoo because that's his needles.

Alex2 [00:28:40]:
No. Us us later.

Jen [00:28:41]:
Yeah.

Dirty Skittles [00:28:44]:
Hannah Hannah tattoos.

Alex2 [00:28:46]:
That's mom. I don't do that.

Jen2 [00:28:51]:
Mom to chicken too.

G-Rex [00:28:55]:
So, like, so you're gonna, like, take over your grandpa's business and but can you play sports, Or are you are you just trying, like, stay away from all things like that?

Alex2 [00:29:09]:
No. I play I could play a little everything. I always tried every sport. I the only star sport I really didn't play when I was younger was baseball. I tried soccer. I think I tried soccer, mom or no?

Jen [00:29:19]:
Yes. You did.

Alex2 [00:29:19]:
I tried soccer when I was younger. I I played football. Was my one of my favorite my favorite sport was football, and I was really good at football. Well, when was first of all, I tried basketball 1 1 year. And at school, I usually play basketball for fun over there. And football, I haven't played yet for high school because I had when I was playing basketball 1, last year, I broke my kneecap. So it's okay.

G-Rex [00:29:45]:
No. No. No.

Alex2 [00:29:47]:
I it's not like broken broken. It's like chipped. It just hurts to walk sometimes. Yeah. It's

Dirty Skittles [00:29:52]:
just barely break. It just hurts to walk a little bit.

Alex2 [00:29:55]:
I'll be alright.

Dirty Skittles [00:29:57]:
So questions, Playing sports, you you talk about, like, trying basketball, football. You're touching balls that other people are touching in the sport. Is it just a lot of washing your hands and, like, just staying safe that way, or is there anything else that you have to do? No.

Alex2 [00:30:12]:
No. I just I play sports, and I wash my hands usually after.

Dirty Skittles [00:30:15]:
Yeah. Okay.

Alex2 [00:30:16]:
I keep I try to keep my hands away from my face. That's at most.

Dirty Skittles [00:30:19]:
Yeah. Okay. So it's not completely, Like, debilitating. Right? Like, you can take measures without having to be in a bubble.

Jen [00:30:32]:
Yeah. Ideally, they want him to be in a bubble.

G-Rex [00:30:34]:
Yeah.

Jen [00:30:36]:
But I but I I just can't with his personality. Yeah. There's no way. Yeah. There's absolutely no way. So he does try. Like you said, he tries everything. I mean, when he played football, it was flag football, but he's never played in high school because then I think there's no more flag football in high school.

Jen [00:30:53]:
You have you have to play tackle. So he was like, nah.

Jen2 [00:30:56]:
Yeah.

Jen [00:30:57]:
Never mind. Yeah. Never mind with that. So there is limitations, but, he's not afraid to try anything. And and we we I allow him whatever he wants to try, you know, obviously, with limitations and stuff, but, Yeah. He he does try it.

G-Rex [00:31:13]:
And and how's the school been with all of this, you know, from the time he was first diagnosed to, you know, he's, What? He's gonna graduate this year. Right?

Jen [00:31:22]:
Yes. So, school has been definitely challenging. You know, once you start to miss too many days of school, you know, they start to say, we're gonna subpoena your your absentee records, which I get. Right? They don't know are you missing because you're being abused sure what it you know, what is happening at the home. So, you know, you just like, 1 or 2 times, I had to prove to them, you know, with all of my My 6 inch binder that he really, you know, does have an immune deficiency, and this is what's going on. He really is sick and, you know, all of The the information from the hospital and the doctors and stuff, and and then they they did, you know, get it. But because of this was happening, you know, as he was really sick, close to the 2nd grade, he started to get, like, splinter skills. So when you go to the hospital, they have a teacher there that is willing teach you, but I'm sure you guys have been sick before, and, nobody's interested in learning anything

Jen2 [00:32:19]:
Right. When you're when you're not feeling well.

Jen [00:32:22]:
So he had what they refer to as splinter skills. So you learn one thing, you're missing another, you learn another thing, and you're missing another. So, we held him back in 2nd grade. So he's 18, but he's graduating this year, which will be wonderful. But, You know, the school has been as understanding as they can be about it. They, you know, allow him to to, you know, Bring his medication to school as he needs to because, obviously, you know, he has, you know, a puffer that he can use while he's at school and all of that. They've been They've been very, very understanding once they understood his diagnosis. Yeah.

Jen [00:33:00]:
So, yeah, they've been very, very interesting. Ma'am

G-Rex [00:33:04]:
And as far as far as work goes, I mean, have you had to use FEMSA or any of those programs that are available To help take care of it?

Jen [00:33:13]:
I I have not. I have I've been so grateful to have such amazing people around me that They there's no question. Everybody jumps in, covers my role, whatever needs to be done. So I I have not. I have I mean, where where I work, I have unlimited, you know, PTO, so I've been really grateful for that. But like I said, you know, He's older Mhmm. And, he's he's been clinically doing really, really, really well. Nothing like we experienced when he was younger.

G-Rex [00:33:46]:
That's great.

Jen [00:33:46]:
You know, through the years, even though he's not his immune system isn't, you know, building like you would think it should and be built At this age, he's clinically doing well. And I can just say that's because, you know, he's older. He's able to advocate for himself, And, he's able to, you know, do all of the precautions that he needs to. Like he said, keep his hands away from his face, wash his hands as much as possible. You know, wear masks where you know, it might not be popular anymore, but these are places

G-Rex [00:34:17]:
Yeah.

Jen [00:34:18]:
You know, we still wear mask and stuff. Wow. So yeah. Yeah. So he's pretty

G-Rex [00:34:24]:
good. And with the advanced ones in medicine, you know, every year they Come out with new stuff. What is Alex available for, like, any clinical trials or anything That might, you know, just help him out a little bit?

Jen [00:34:40]:
Yeah. So he he was. I mean, they had reached out to him several times. They would, you know, try to do some clinical trials and things with him, especially with, like, stem cell and stuff like that. But it That was getting around the time where he was like, I'm done. I've been poked and prodded my whole life. I am not interested. So he has just maintained That attitude of the, you know, be re respectful of his immunologist, and he does listen to his immunologist, but Doesn't really wanna listen to anybody else.

Jen [00:35:12]:
He doesn't wanna see any other doctors. He doesn't really wanna do any anything. But if, you know, anybody is sick or, you know, like I said, we do a lot of volunteering for Make A Wish and for Give Kids The World. He would do anything for anybody there. You know, but as far as his own personal health journey, he's pretty much at his limit.

Dirty Skittles [00:35:32]:
Yeah. Yeah. So, Alex, I have 1 last question for you that I have been thinking about since we talked to your mom before. You're 18 now. My question is and it might be personal, but and you don't have to answer it. We can edit it out. Do you see yourself Getting married one day because that's germs. Right? Like, you're now introducing another person into your life.

Dirty Skittles [00:35:59]:
I I'm just curious. Like, Do you

Alex2 [00:36:01]:
think about that at all? I think when I get old I'm a little older. I maybe get find somebody. All depends on you find the right person at the end of the day. If I if I find somebody, yeah, I might get married.

Dirty Skittles [00:36:14]:
Nice.

G-Rex [00:36:14]:
That's that's really cool. I I have to commend you, Alex. I I commend you. Like, you Your inner strength and your just everything about you, I man, you have More strength than I think most adults have. And I love that you've been able to speak up for yourself and find your own journey. And I'm well, thank you so much for coming on.

Dirty Skittles [00:36:43]:
Yeah. Thank you for for being a part of this, Alex. Jen, thank you for opening up and sharing your story with us too.

Jen [00:36:51]:
It was it still is a village. It really is a village. You it's you have your ebbs and your flows, but, you know, you you put the right people around you. You know, g, Rex, to your point, taking care of yourself first so you can take care of them. You know, he's old enough now he can advocate for himself and try to live the best life that he possibly can.

Dirty Skittles [00:37:17]:
It's okay to be not okay. Just make sure you're talking to someone.