Carmela Updates and Protecting Yourself from Evil Eyes

0:00The following podcast is a Dear Media production.

0:14I mean, it's just so much soloing. Excuse me, my kids are running around here, so I'm sorry if you hear some cuteness in the background. What's going on? Just got back from Mexico last night, headed to New York. tomorrow. And I feel totally fine about all of that moving around in case any of you were wondering if that much work and shifting stresses me out. It does not. It actually feels really good and I'm grateful for it. So please know that I do not encourage busy bragging. I'm not into like, like the promotion of overworking, especially in like the female founder space, even though I'm sure you're going to say, that's all you do.

1:05I'm telling you, I'm like an ADD freak and doing this much is my happy place. I don't encourage this for other human beings, but we went to Mexico and it was a long journey, but it was a beautiful one. Mexico has always been one of my favorite places on the planet. It's, I've have like, sharing a border country, sharing a border, excuse me, with Mexico has just been like a pleasure and a gift my whole life. You know, growing up in Los Angeles, obviously we have a really heavy Mexican and Hispanic community here and it has brought nothing but joy and love and fun and deliciousness to my life. And I've been to Mexico endless times and many places.

1:57I've never been to Merida and it was just magnificent. Felt really good landing, like smelling the air when I landed, felt really good. Like just, I just feel so like enveloped in love. I feel very safe when I'm there. I feel like nothing. I don't know. I feel, I felt very taken care of and safe and the family that owns the clinic. So I found the clinic. I said this before because we did an intensive on Carmela in Newport or in, in Orange County, pardon me with O team and Aaron from O team works really closely with Omar. He and his father run the New Organa clinic. They're both on the stem cell board and they're just angels.

2:45Omar and his wife, Tatiana are like so chic, la freak. They're both like a questions and just really smart. And Omar's mother was telling me that his wife, Tatiana was the one that was doing some research into stem cells and was really wanting to do something to help children in the medical field and did some research on it. And then they like did a deep dive and now it's what they do. So he and his dad are the two main doctors. And then his Omar's mother, Teresa, who was just an angel, like a beautiful, like just like a motherly, beautiful woman. And her associate Mila would just like pick, like, I would be like, I can get an Uber.

3:32Like I can, like they treat you like your family. So they were like, does Carmelo, oh, she likes to swim. Like we have a beach house. Like you can go to the beach. Like they let all their patients like go and stay at their beach house and swim because a lot of patients stay for an extended period of time for a multitude of reasons. One of which is like, they'll also do like PT and OT and speech clinics down there. So, and if you're flying directly in de Merida, the flights are sporadic. So like a lot of the families I talked to there were like, oh, we just like made it a family vacation. So we all came down here and we're here for a week and the Airbnbs are affordable and there's some really great hotels.

4:10And then if, you know, you extend a little longer, you can do some beach days with your family and then they'll do like, you know, PT, OT, speech intensives along with all the various treatments that they have there. And so, you know, this is like undoubtedly complicated and layered, not complicated. It's just my feelings, my emotions, my motherhood. It's just a bunch of it's been talking about it with Whit, who I've had on the podcast. I need to have her back on, you know, one of my besties, Whit, who is a really incredible life coach. And we had like a really cool call about it this morning, mostly about how so many things can be true at once.

4:59So I stay in what I'm sure some of you would say is like a toxically positive mind state because I'm so deeply in gratitude. And, you know, I think our volunteer work, I say this all the time, like our volunteer work with little wishes and like seeing kids that have been just like fighting their whole lives to be alive, obviously puts in perspective our situation tenfold. Like we have a child who is ultimately incredibly healthy and is happy and runs around and eats and has a full life. And that is anything you could ever ask for for your child. I haven't really shown you guys like a lot of videos of Carmela and how she communicates, but she doesn't communicate with us.

5:52She scripts all day long and it's adorable and very cute. And it's like a puzzle piece because when you have echolalia, you associate feelings and moments with a particular phrase or a song. So like there would be like really happy songs that she'll start singing and she'll start crying. And I have no clue like what that song is associated to, like what memory or what moment happens when she heard that song, or maybe there's a word in the song that's similar to something. It's just all this like beautiful, big, complicated puzzle piece. So, you know, she's still in a diaper. She can't feel when she's going to the bathroom.

6:34She doesn't have the mind body connection. The two sides of her brain don't really communicate very well with one another. So that's why she feels so insecure in her body because she doesn't feel like she's in her body very much. And so I've never seen her. I'll just tell you what I saw today, which was just an example. I've never seen her like push to go to the bathroom. And you see that all the time when you're with like little kids. It's like, oh, so-and-so's pooping and like their face is all red. And you see that like, that's so normal with any sort of like little baby or child or toddler before they're potty trained.

7:09And you know, it's been five years that she's been in a diaper and not once have I ever seen her do that. And I saw her do it last night on the plane ride back, which was like a fucking miracle. I digress. I knew, and I said this, that this trip, outside of it being a lot of travel, that's no problem. I can be smote through that. We landed, it was like almost three and a half hour drive to Merida after a five hour flight. And Carmela and I called on the plane and we had M &Ms and we watched, she watched Moana and then she took a nap. We both took a nap at the same time. And then she got to watch the iPad in the car, which I don't really love.

7:46Not the whole time, but like half the time. And, you know, she's, it's, it's, there's an interesting moments because she lives in this world that I'm not in. And she's constantly playing moments and songs and reliving things in her head and talking. She's always talking to herself. She's like fully entertained and in her own world all the time. It's not like a neurotypical kid who's depending on you for entertainment by any means. Carmella can be alone for a very long period of time and be more than content with that. She prefers it. And so I do often feel bad. Like I say, like I feel like she's like an angel in like another dimension.

8:30And I'm just like constantly pulling her back into like our world. And I do have some guilt about that.

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14:34I knew there were two things that were really like weighing on me about the trip. One was just having to hold her down and put the stem cells in her nasally, which is up her nose and doing the IV. Anytime you have to hold a child down to do anything, it's sad and feels wrong, even though I know that it's right. And it's for a cause. I had to do it once before when she, I've had to do it a couple of times when she's had to get blood work done and it's terrible. And I don't, it's not even like that she's in pain. She doesn't like being held down in that way. She doesn't like when a doctor puts a stethoscope on her.

15:12She doesn't want people messing with, she's not even sensitive to it either. It's not, she doesn't have a lot of sensory issues in that way. Like we do her hair every day and you can dress her and undress her. All those things are fine. She just like, when she knows someone's going to like manhandle her body, she has a really good intuition for it and she doesn't want it. So, you know, forcing her to be uncomfortable was obviously something I was nervous about, but you know, I was like, we're going to be with a group of people who do this all day long for a job. So we're definitely in the best hands.

15:44And then the other thing that fucking crushes me, just go into weight rooms of places with children who need help. And it it's, I, it's awful. And I can't tell you, I mean, even when I reference this a lot, but even when I did that 10 week program at UCLA with Carmela, you know, there was a mom that was also in the program. Cause you would obviously see all the parents that drop off and pick up. And you see that these people, these couples and these grandparents and the caretakers and other people involved, like they're exhausted and they're lost and they're hopeful and they're doing everything they can.

16:39And I remember this one mom who, you know, you can catch, I learned so much of this from being a waitress, like just initially like catching a vibe from somebody and being like, do you want me to interact with you? You want me to give you space? And this mom was definitely like a quick drop off kind of like would make a lot of eye contact. She was just like doing her thing. No fucking problem. Like I was like, I was like into her because she was very like quick and getting it done. And, you know, I also always admire somebody who like, doesn't really feel like they need to make like small talk and become friends with everybody.

17:13I respect it. But I started to then sense after like a couple of weeks, this like intense level of stress from this woman. And then we ended up starting having like a little bit of a dialogue, but it only happened because she had a fucking meltdown one day in the hallway. And she was like spiraling in like a normal way. I've done it before, but she was like talking to herself as she was venting to like the group of parents. And she was like, I fucked up at work. And she's like, I've had this job for 10 years and I love my job and I never fuck up at work. and it fucked up. And she was like, I can't do this and work and be a wife and be a good mother to my other children and keep it all together.

18:00Like I can't do it all. And she just was like hysterical. And she just wanted us to listen. She didn't need any advice, obviously. And then And obviously, because I saw her her most vulnerable moment, she then we started talking and she opened up about the fact she has an older daughter who is incredibly intelligent and she feels a lot of guilt for spending so much time on her son. And her son was so interesting to me too, because he was totally nonverbal, but he was so much more cognitively available to everybody than Carmelo was. Even still now, like the kid was with us, like follow directions.

18:45He listened. He was like fully a completely developed age appropriate, mentally beautiful boy. And he just would never have said anything. and and so she was like my daughter's like academically advanced and so smart and you know we have to harness that in these ways and she kept I remember her then she cried again to me and she was like what's he gonna do like stock shelves at like a shitty store one day like will he be homeless if something happens to us like what I mean it was just so sad and so when I tell you like outside of seeing parents in waiting rooms with like extremely developmentally and physically disabled children, it's like the ripple effect of something like that happening to a family is so deep and wide on every family member on the finances.

19:43Like there were families in this, in this program, this last four days who had like cognitively completely perfect older children. And then like a little girl was there who had brain cancer as a baby and between the surgery and the chemo and then something else happened. And they think like all these different things happen. And now she's, you know, has like the mental capacity of like a baby and she's almost four and the girl's miserable. and but then she would be really happy and then she would be screaming because and then she's and she's somehow they think that something happened with the chemotherapy that ignited some sort of growth hormone in her so she's gotten really big like she's tall and she's strong she's like four carlos put together like she was just then and then all of a sudden she would like smile at you and like it's like oh she was sorry you don't want to say her name she was darling and then also so miserable because she can't, she doesn't know what's going on and she can't, it was just, and so this poor family said that they live in like a medical desert in Kansas.

20:57They live in a town of like 2000 people and they just told them to put her on palliative care. So obviously they're trying to do whatever they can for her. I mean, so it was just like story after story after, you know, there was families, they're from Shanghai and there was a family. They're from India and there is a single mother there with a child that doesn't have much of any brain function. And her goal was only to get her. Hopefully she wants her son to recognize her one day. So, and so much cerebral palsy. And by the way, so many near drowning and so many medical accidents. It's just, so again, I don't, and Whitney and I were talking about this this morning, like not, you can't like compare trauma, right?

21:51Like, but there has to be just a lot of metacognition. And so she was telling me like, you know, because somebody has it worse than you doesn't mean that it's not hard. And, you know, in those moments when I start to spiral that I need to do metacognition and I need to just bring myself back to where I am and name three things that are true. Like I am standing, I am on my way to the store. I'm going to pick up Carlo. Like I am healthy. I have a home, like, you know, whatever, just three like realistic things. And she told me about like the Stockdale paradox, which is kind of like an interesting, not kind of, which is like a really interesting study that a doctor did where she explained to me that in moments of high traumatic stress, and they were using, I think examples during like World War II, where people that had the ability to acknowledge the sadness and have hope would survive over people who only had hope and lived in like an ignorance is bliss scenario because they would ultimately die of a broken heart.

22:59Like that in itself broke my heart. And so she said that I have to just focus on what's available to me and how I can think about her as a person in a new way and not think about like every single thing that we've been taught about what it is to be like a fucking human being on this earth. I literally have to separate like Carmela from that and put her on her own journey because I do have really deep fears. I have a beautiful daughter that I feel is really vulnerable who cannot tell anyone what her name is or who her parents are or tell us if she's in pain or hurting. I mean, there was a moment there where she was crying for a period of days and we had to like do a painful test to check to see if she had a UTI because she can't tell us where the, you know, it's like there it's, it's a lot of it for me comes down to dignity.

24:01I mean, imagine all the, all the fear you have of a child who can't communicate. And then I think too, like, okay, I obviously want her to talk. And then I think like, man, like, you know, zero to five are like the most important, obviously like developmental years in your life. So like on top of her, just being able to call us by our names or like say she's hungry, like that's step one. Like then we have to figure out like social cues. And oh my God, the stewardess on the plane ride back last night told me that she has a 26 year old son. And when he would get in trouble in class, he would smile and keep smiling and laughing.

24:53Like as the teacher was yelling at him and he had severe autism, but they didn't really, it like became a problem. And there wasn't, he wasn't in the right, getting the right services. And so teachers would yell at him and they thought that he was taunting them and that he would get home and like the teacher would explain what happened and she'd have to practice with him looking upset because he didn't, he couldn't match like his face with the right emotions. And she like cried to me on the plane about how hard it is. And I asked if she had any other siblings. And she said he has a sister who like moved away to New York as soon as she could and that she has PTSD from the whole fucking thing.

25:35So I've seen some people say online about me that like, I shouldn't complain at all. And that there's like barely anything to complain about with her, but I have real valid fears. I mean, she's five now. So, you know, now we start school next week and I have to, again, go into the class and explain to them like why she's different and to be nice to her and that she's not going to answer them. And please keep trying to play with her, even though she doesn't play with anyone and who her ABA is that, you know, Raquel is going to be with her there every day. And thank God we're in a school that has multiple children that have special things.

26:20And I think this, and I've heard from so many teachers that having a child with anything that's different from other children only enriches the classroom so much more and builds a more empathetic community. And that's what I'm hoping just to do in general. But, you know, these are just, I don't want to make this a sad podcast. I will tell you what I've seen so far. The stem cells, like the first time we put them in up her nose, I felt so sick walking into that room. I never have that level of anxiety and it just hit me physically. And it took all of a few minutes and it was done. And it was totally amazing and no big deal.

27:04And they just did it so quickly and they were so sweet and kept her entertained. And afterwards she was just in such a good mood. And I don't know if that's because she felt my relief of the stress or what, but she, since the first day we put them in, which was four days ago, has been in an unbelievable mood. She has been eating way more than I've ever seen her eat. She's been drinking a lot more. I saw her push to go to the bathroom. I've never seen that. I watched her walk upstairs yesterday without holding onto anything. That was really wild. So we'll see. And I'm going to keep everybody updated and it'll just be a journey.

27:50The results can start developing over the course of the cells work in their bodies for three months. this is something that you can do again. It doesn't work and wear off. It works. And then if it works, if there are changes, they are the permanent changes. They don't go away. You don't have to keep maintaining it, but if it works or doesn't, and you want to do more, you can do more after three months. So we're going to see, we're going to see what happens. I'm hoping for the best. We also see, you know, Carmela has a neurologist and a functional medicine doctor and a regular pediatrician, but our regular pediatrician understands functional medicine a lot.

28:31And she also has a child with autism, which is super helpful. And then now we have the New Organa team as like her medical team too. And they were like, please ask us any advice. And they know all the medications that she's on and they're suggesting things and they want to work more. So I feel like we have like a really good on top of there's more therapy that she needs, But on top of and we do that all day long. But on top of all of that, I am I feel like we have we're just like on the right path, which feels really good.