ParentsUncut Pod
This is a Podcast surrounding the adventure, struggle, beauty and intricacies of new parenthood. Hosted by three parents, totally 10 kids in together, they go through their mazes and phases of parenting styles, parenting norms, modern day parents, their trials and tribulations whilst keeping it raw and unfiltered. Thanking you for joining us on this journey and we hope we can bring some value to new parents, old parents and those thinking of becoming parents
ParentsUncut Pod
12 Years of Love: A Mothers Reflection on Loss and Love | Episode 4 | Parents Uncut Podcast
The echo of laughter and the weight of silence have one thing in common – they both can leave an indelible mark on the soul. This episode honors the profound journey of an educator and mother, Kinder, whose son, Jasiah, navigated the tumultuous waters of brain cancer. The depths of despair and the peaks of hope that characterize her experience resonate in a narrative that is both intimate and universal, exploring the fragility of life and the tenacity of the human spirit.
As Kinder opens the door to her heartache and healing, we accompany her through the milestones of Jasiah's story—from the emergency room to the school hallways where he sought normalcy amidst his treatments. These dive into the preservation of a child's innocence while confronting the stark realities of a life-threatening illness. It lays bare the excruciating choices a parent faces, the importance of a robust support system, and the unexpected joys found in the darkest corners of a family's journey.
In the wake of tragedy, life's narrative continues, and so does the legacy of those who leave us too soon. Kinder shares how she keeps the flame of Josiah's memory alive, not just through an Instagram page that connects a community in mourning but also through the subtle signs of his presence that bring comfort and reassurance. This episode transcends mere storytelling; it's a tribute to resilience, a reminder of the impact one life can have, and a guide for anyone navigating the unpredictable waters of grief and loss.
Instagram : @thejasiahstronglegacy
podcast : @ParentsUncutpodcast
Thank you for being here, thank you for your time and energy. We hope that we can ALL build this incredible community for parents by parents with parents.
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In the ER. When we see this, it's either because someone has had a seizure or they are going to take their last breath. As I'm talking to him, I'm saying like you know, I love you, I love you so, so much, but what I don't want is for you to fight this fight for me. If you are done fighting this fight, I don't want you to fight for me, no more.
Speaker 2:Ladies and gentlemen, welcome to Paris on Cut. I am one of the hosts. Here are some Contreras, along with my two lovely co-hosts this is you got to write jazz.
Speaker 4:Hi Jax.
Speaker 3:And we have a special guest, miss Kinder.
Speaker 2:Hey guys, Is Kinder your first name?
Speaker 1:Yes, like kindergarten.
Speaker 2:What does it mean? Do you know?
Speaker 3:Child Really.
Speaker 2:That's why it's kindergarten that you're grooming children.
Speaker 1:This is from Germany, but I'm not German.
Speaker 3:Well, that name suits you because you're like an educator, right? So I?
Speaker 2:am an educator. Oh, he would destined for it. Spot on Very childish too, listen we were just having a conversation about that, because, like, oh listen, you grow up, but you don't have to grow up. That's very different. You don't have to be all hard-bodied about it.
Speaker 3:Absolutely not. So I said I just turned 40. So I was just like I don't feel like a grown up 40. I have a moment.
Speaker 4:I'm not an adult. I told you guys. I opted out Not doing it.
Speaker 2:I tried to adult. It just doesn't work for me. Obviously, as you guys saw before, the camera was wrong. It's not my fault.
Speaker 3:Thank you.
Speaker 2:That's Amir aka the producer of the show, the genius mind behind all of this, a man that puts up with my stuff, as I'm texting a bunch of stuff in the group and he just goes like and then talks about something else.
Speaker 3:AKA the man who zooms the camera on all our bad angles Right inside my freaking barber.
Speaker 3:But when we decided to do this podcast, we wanted to bring awareness to parents on all aspects the good, the bad, the sad, everything in between. So the reason that we call the parents on cut is because we want to cover everything with an unfiltered aspect the raw truth behind things. Not everything is going to be happy memories. People only post the positive, they only post the good memories, but they don't post when they're going through the hard times. Yeah, yeah, absolutely. So I asked you to come on because I know that you have a really strong story.
Speaker 2:Probably the hardest time in a parent's life.
Speaker 1:Yeah.
Speaker 2:Ever, the only thing you don't expect.
Speaker 1:The one thing you don't expect.
Speaker 3:Yeah, so if you don't mind sharing your story with us, you can start on your background. I read the article that you sent and they really did a great job on that article, thank you.
Speaker 1:Thank you, thank you.
Speaker 3:And congratulations. Thank you, thank you Thank you?
Speaker 1:Yeah, so I have been. I met somebody today and he was like you know, how do you have children? And I was like I can't say it's weird saying I have three children because in my home I have two. But, however, I do say I am a mother of three and sometimes it's like, well, what do you mean by that? And it's dependent on who the people are that I meet. You know I don't want to go into full details because you need to know my life, but most of the time it's just a genuine conversation that I'm having. But it's hard to bring up my oldest son passed away from brain cancer, because you never know how people are going to feel about that. So my oldest is Josiah and that was, he was my life, that was my best friend. We I can't tell y'all Josiah kept me in check, low key, like somebody referred to me and Josiah the other day as the hood mom with the corporate America son. Oh my God. Now Jasmine, you know Josiah.
Speaker 3:Yes.
Speaker 1:Very proper, he was very proper. Very yes, ma'am, no ma'am.
Speaker 3:He was wise.
Speaker 1:He was the old soul, Wise beyond his years. I don't. I always say that I never gave Josiah a beating. I probably hit him like once, but I never had to discipline him in ways that I had to discipline the demons that I had in my house.
Speaker 3:It's usually the second child right.
Speaker 1:But now the third one is like, have me like take sips here and there, because I can't. So Josiah was diagnosed with brain cancer the year he started middle school, at 10 years old. His birthday is late, so his birthday is in December, so he got diagnosed with brain cancer at 10. Initially my suspicion was maybe it's the backpack. The middle school books are a lot heavier, so maybe it's the backpack. So let me go buy him the North Face backpack, the ones with the straps in the back, this and the side. It wasn't that.
Speaker 1:So one morning I'm like well, let me carry your backpack and you carry my lunch bag, and then we'll make it to school. And we're walking and he just drops and I'm like get up, because I'm not thinking that something is really wrong. And I think about that day, not constantly, but often, because I'm like what's I mean? Was I too harsh? Because we're trying to make it to school? Everybody has to be a school at eight o'clock. I'm trying to get you there. I'm trying to get me and McKayla there in a reasonable time Always late, by the way, that's all power.
Speaker 1:But you know, at that moment when he fell, people are coming and they're trying to help him up and it they was like maybe he's dehydrated, Maybe he needs food. I said stop, because I cook every morning and I don't just give them cereal and milk, we have grits, eggs and bacon, pancakes, whatever they want in the morning. That's what I cook. Can't tell you what time I get up, because still do it till this day. So I told him to go to school because he had a math test. Was he able to get back up? I said go to school. I said because he didn't just decide it was all about school. Oh yes, Love school.
Speaker 2:He wasn't unconscious when he fell.
Speaker 1:No, he just dropped.
Speaker 2:Okay.
Speaker 1:Okay and he, so people are trying to help him up. Once they helped him up, they were like okay, he's dehydrated, he's this, and I'm like no.
Speaker 1:So when he got up and we started walking again, I was like, take your time, but I need you to go to school. He was like, well, I have a math test. I said, bro, I'm coming back for you and I'm going to take you to the doctor, because who better would know why he fell or why he's limping than his pediatrician that he has had for the last 10 years? And he, he goes, I can't miss my math test. I'm like, bro, that math test will be there waiting for you when you get back. He was like no, it's all right, go school Now. I've had to go school.
Speaker 1:So when I let him go to school, I went to work. My Kayla was going to school where I worked at at the time and I went to my principal at the time and I was like, listen, I don't know what's going on, but I know that something is wrong. I need for you to let me take him to the hospital. She said, no problem, my principal is very loving, she's a rock Like she's really like. No problem, do what you have to do family first. And I was like, okay, I'm gonna, I go. So I go to pick him up. He did part one of the math test. We get to the pediatrician's office and the pediatrician was like she tells him to walk, tells him to go back and forth, and then he does it. And then she she says, take him to the hospital. I don't know what's happening.
Speaker 1:So it was very like, noticeable though it was very, very noticeable. She was like I need for you to take him to the hospital.
Speaker 2:Was he in pain?
Speaker 4:No it was just a limb.
Speaker 1:It was just a limb, okay, like he might have complained about a headache once or twice, but I get chronic migraines and I've had them since I was 13. Okay, so for me it's just a headache. And he didn't complain when he fell, he was just like I don't know why I felt. So I said to him I said, okay, cool, we get to the hospital. We must have been there for like at least 24 hours because they did a spinal tap and they did this.
Speaker 3:They did? They want to screen him or were they quick to just write, like to like, write it off?
Speaker 1:They were quick to write it off at Paris. But then they were like so we can get you a CAT scan, but so far the the, the spinal tap, just says that he probably has like a little bit of fluid and I'm like give him an MRI. And they were like, well, because they don't like doing those things, and I'm like give him an MRI. And we didn't get the MRI till the next morning. It was a two hour MRI, with contrast, without contrast. It was a two hour MRI. And I think that I was just so annoyed that one he's hungry now. He wants to go home, he wants his video games. I want to see my kid, I want to go home too. Why did it take till the next morning to get this MRI? And then they expected him to stay still for two hours in an MRI machine at 10 years old. He did the best he could and then we went back out and we sat in the we're still in the emergency room. So we stayed in there 24 hours, 24 hours still in the emergency room, and we're looking at each other and I'm like so he was like mom, I'm hungry. They weren't letting him eat at that time. They kept saying that they didn't know if he could eat or not, because they didn't know what was going on. Okay, so you know, I'm trying to be understanding because he's at the best place possible, because I can't find out what's going on with him at home. However, he's 10, he's hungry, he's tired, he wants to play his video games and this is not an ideal place for him. So another hour goes by. He's like mom, I'm hungry. I said okay, cool.
Speaker 1:I went to the nurses station and I said let me tell you something. I said my kid is hungry. He has not ate anything since yesterday morning. He's hungry. And I said y'all keep telling me to wait. This is what they said to me. Didn't college come to see you? And I said who's that? I didn't know nothing about oncology until then. I said who's that? They said you're waiting to see oncology and I said, okay, somebody's hungry.
Speaker 1:So the oncologist came, but she came with a social work at the time and they come in the room and I was like stop, not in here. He was in the room. He was in the room and I said not in here. And they were like okay, I said y'all have to find somebody to come sit with him and they were like, okay, and he needs breakfast too and something to drink and a video game, he needs stuff. So they were like, okay, no problem. So they met my accommodations for him and they took me to another room and they pulled it up on the screen and they were like there is a 10 centimeter tumor pressing on his spinal cord and this is why he's having trouble walking.
Speaker 1:And at that moment I think that I dropped, I bent over on the bed and then I just started crying, because when you hear tumor, you automatically get discouraged about anything else. And for me, this is my child. I don't want my child to go through anything at all. But now you're telling me that I have no control over what's about to happen. And then they come in the room, they, she left the room and she came back and she said he has to have surgery. And I said okay. When, as soon as possible, I said is this that serious? They said it's very serious.
Speaker 3:I said okay.
Speaker 1:They came in, they brought the paperwork for the surgery. He's still in the room but he still does not understand what's going on, because I didn't say anything, I didn't know how. Like how do you tell your 10 year old child that you may have cancer? And you, this is? I still don't, I'm not educated on it, I can't explain it to you Because technically, I'm mom, I'm supposed to protect you in every way possible. This is not something that I could punch in the face, this is not something that I could curse out, this is not something that I can. I have to hold it together. I have to hold it together.
Speaker 1:So I remember, when I told him that he had to have surgery to have something removed, he said what? And then my sister, lydia, she had said to him well, you know how mom does not like gum in the house or at all, and she was like, yeah, he said yeah, and she said, okay, they got to go in and remove that gum. So by Friday because it was Wednesday, by Friday he went into surgery. And I'll never forget, because I call my job, I call my mom, I called his godmother, I called his dad, I called everyone, everyone that I knew needed to know, needed to be there. I called them and once Friday came, we sat and we waited. My sister was there, his godmom was there, michaela, my daughter was there and we just sat and we waited and they told us that initially they told us that the surgery should have been about two and a half hours and I can tell you, guys, that that was the longest 10 hours of my life 10 hours, 10 hours.
Speaker 1:How old is Michaela at this time? She was eight Wait, hold on, she was. She was either seven, she was in the first grade, so she was six, six, she was eight when he passed. So she didn't understand. But she understood that her brother was sick. So when we went I said to them, I said, listen, I need to go take a break. So they put it. I said the Ronald McDonald house because I didn't drive. I still don't drive, don't judge me. But they put us at the Ronald McDonald house. I was like, okay, let me at least go shower, change my clothes. Can you guys call me if they come out? And they say something? And then I came back, still waiting.
Speaker 1:There was no updates in between there was no updates in between, but I knew that they were going into his spine, so it's sensitive, so I didn't want to rush, I didn't want to do anything. I just was like okay. And then finally, when the neurosurgeon comes out, he's like we probably got 75% of it. We didn't get all of it. I said okay. But then he says this is cancer. He said we have to wait for the pathology report and the biopsy to come back. But this is a form of cancer and I was like I got up, I walked away and I went and I never forget through this pool that I sat on and I sat in front of it and I just dropped to the floor and I sat there and I was just like nah, nah, you can't tell me that my perfect son has cancer. This boy's never gotten a beating. I don't even have to raise my voice and, as parents, you all know when we ask our kids to do something, if you tell your kids to do something, you get lip sometimes choo-choo. Just, I didn't give me that. He gave me okay, no problem.
Speaker 1:So they let us upstairs to see him. He comes out of surgery. And he was like how long was it? I was like five hours. I lied Because I didn't want him to think. But then he was like, oh, it felt like five minutes. So I said okay, because he was asleep. So I said okay. I was like how do you know? But what they didn't say was he was going to come out of surgery not being able to walk in diapers, basically from the waist down what's gone, so they didn't forewarn you that this was a possibility.
Speaker 2:No, but could he feel his legs?
Speaker 1:He had minimum feeling in his leg. It was like minimum because he didn't know when he had to go to bathroom at all. He didn't know. He knew he couldn't walk and I was like diapers can't walk. And then the neurosurgeon was explaining it to me and he was like this is a marathon, not a sprint, and you have to be patient with this process.
Speaker 1:At this point and he said I know, going into the spine is a very touchy area, but it's likely, but less likely, that he will be able to walk, or he may not be able to walk, but we don't know how the body recovers because he was young. So from those moments on he got transferred from the hospital to the rehab hospital, st Mary's Hospital, and even that was just like so he's going, because initially I thought that he was just going to come home and I'm like, well, he's supposed to get discharged in a couple of days, so. But then they explained to me that he has to go to the rehab hospital because they have to prepare him for life, basically. So he had to do physical therapy, occupational therapy, like everything. So I was like, okay, how long is that going to take? Because naturally you do not want to be home without your children.
Speaker 2:During this time, what did you tell him was happening?
Speaker 1:So I did not tell him anything. I told him that because of his surgery, he had to go to the rehab hospital so that he could learn to walk again and he could try and gain full range of motion and things like that. And I did not tell him that he had cancer, jasmine will tell you. I refused to say it because I didn't want him to be like, oh well, I have cancer, I'm going to give up.
Speaker 1:I didn't want that. So I felt like I was protecting him and then I told him I'm like, well, they still have something still there and get back, so you have to go to radiation therapy to try and shrink whatever is left. Now, when he was in St Mary's, we went to radiation every single day, from Monday through Friday, every single day, except I don't think we went on Saturdays and Sundays, but Monday through Friday we went, and Michaela was right there.
Speaker 3:How is that process of radiation? What do they do?
Speaker 1:So they created this cast to measure it around his back and they basically direct the radiation to that specific area and then they give him nausea medicine that he's supposed to take right before we go, and then we would go. Now again, I didn't drive, but they were able to set up transportation to take us every single day. My co-workers was amazing when I tell you, guys, michaela would go to school. I would take Michaela to school in the morning. I'm over at this point, taking her to school, then I'm going to the hospital. My co-workers would pitch in and have select days to bring her to me after school. So once she got to the hospital from school, we would go to do radiation. That's why I said my co-workers are amazing, because they were a part of my support system my family and friends, some some. So we never want to decide to be alone Never, because he's not alone when he's home. So they would take turns on who's going to stay the night in the hospital with him for the whole time that he was there at St Mary's.
Speaker 4:How long was he in St Mary's?
Speaker 1:So he was in St Mary's for seven weeks. He was in St Mary's for seven weeks because the radiation was six weeks and Chessiah was determined to come home. He said, mom, I just want to come home. So at that point, when am I going home? When can I? Why can't I go home? Why can't I do this from home? And I was just like he wants to come home. He has to come home, and I would like for him to come home by his birthday, because he went there in October. His birthday is December 7th, so I'm like he has to be home by his birthday. And, funny enough, the day that he was supposed to come home he spiked the fever. Let me tell you something you cannot tell me. Oh, it's just one more day, because then I have to go explain to him this one more day. He's already come home, he's already ready, he wants to go home, and they refuse to give him his radiation too.
Speaker 4:Because of the fever, because it lowers the immune system.
Speaker 1:And they didn't know what was causing it. And then if you get a fever, then you are. It could be infection or something like that, but all of his blood work was fine. It was just like a fever out of nowhere and I'm like you can't tell me it's one more day. So then, because we were actually at the radiation site and they were just like no, and I went off, I went in straight mom and grandma, and I was like I'm not telling him one more day, so you better do it now Because I'm not making him wait another day and they were like oh my God, they've never seen me like that. Josiah's never really seen me like that, because I don't really act like that. However, we wanted to go home and it was so funny because we had to wait. So when we did go back and then he did do his very last day of radiation, the doctors didn't know if they wanted to hug me or not.
Speaker 3:Or they thought they were going to get punched.
Speaker 1:They were going to get it, but it was more so like I'm like you can hug me, it's okay. They were like no, I'm over it. I was like it was just that. And they were like, well, I understand where you were coming from. You just wanted to. I'm like no, you just have to understand. One more day, especially to a child who's been in the hospital for the last two months of their life, it's not one more day. So, gratefully, we did make it home for his birthday, had a big birthday party.
Speaker 3:I remember that Really really big birthday party.
Speaker 1:Super Mario Super Mario Because Josiah loved video games, so everything was all things Mario, all things Sonic. He just really that was him. So we had a birthday party and this birthday party in particular, he walked in with his dog on his lap. Well, he was in the wheelchair. I walked him in my classroom and he had a dog in the lap and we were there and it was like it was good because he was able to see teachers from his school, friends from his school, like the kids from the school were actually there and they haven't seen him since September. They were excited. They were excited and I'm just and he was so happy to see them.
Speaker 1:He was so happy to see them, his cousins, his friends. He was happy to see everybody there. And it was a moment at the party where they were like you're so strong, you're this, and they gave me a shout out my friends at the time, they gave me a shout out and stuff like that. But it was just like it's not being strong, it's being a mom and this is what kills me the most. You'll be like you're so strong, you're this, you're that, you're that. And it's like I do what I have to do, like I know what it's like to be in flight mode and fight I can. So you know I have to pivot.
Speaker 1:No matter what's happening. So we in those moments the party was like a really big highlight. And then, after the party, his birthday was the next day. His actual birthday was like the next day and I know if my grandma, my grandma came over my grandmother I'm going to nobody, but she came to my house to see Josiah and I remember her sitting at the bed talking to him and I'm just like this is crazy. But gratefully I was able to bring him home. We had a hospital bed. My building made my the bathroom in the front accessible to like so I can shower him and stuff like that so he can have some sense of normalcy with it. And that was we went home. Now the boy was still worried about school and he was getting home instruction at the time, but home instruction is like only an hour a day.
Speaker 4:And they couldn't do like remote learning they. That wasn't a thing.
Speaker 1:At the time that was 2017, 18. Okay, that's a remote learning wasn't a thing then, but they had home instruction on. Home instruction is when the teacher comes to you for an hour. Now, the crazy part is about home instruction. I applied for it. I got it in two days, so Josiah was getting schooled in the hospital and it was like they were like she don't want to give him a break. While I'm giving him a break, he wants to do this. And so one time and this is how I found out that he knew that he had cancer the home instruction teacher asked Josiah to write down goals for himself. One of the goals on the paper was Josiah will be cancer free and then Josiah will create an organization to help children with cancer, like him.
Speaker 1:The home instruction teacher came to me. She was like can I talk to you for a second? And I'm like sure she comes. And she said can you read this? And I'm like, okay, so I read it. I read it, and as I'm reading it, I'm like how he know.
Speaker 1:So my first instinct is to act. A teacher, did you tell? She's like I did not do any of that. Okay, cool, I wait for her to leave and I go into the room and I said Josiah, you wrote this. He was like yeah, so I was like so tell me, how do you know? He was like it's fine, mom. And I'm like, no, it's not fine. Who told you she was like it's fine? I said so, you don't want to talk about this with me, it's fine, mom. So I left it alone. After that, we went back because he had done radiation for six weeks and then, when you finish, you go and you wait a month and then you go get scanned and stuff like that. So now we're probably at January of 2018. And they're like okay, the scans were good. Almost 95% of it is gone.
Speaker 3:So I'm like, okay, cool, we got this.
Speaker 1:We got this, Josiah goes. Okay, I'm ready to go back to school now.
Speaker 4:He was like I don't want to be on with you in a while, I'm ready to go. I'm like well.
Speaker 1:I'm ready to go back to work. I miss work. But he was like I'm ready to go back to school, mom, it's okay, so let's go. I said I have to find you a special school for children in wheelchairs. He was like no, I don't want to go to a special school, I want to go to school with my friends. And I'm like no, you don't want to do that. Kids can be mean, because I work in education, so I know the kids can be mean. So mine and think is like I have to protect them. He was like no.
Speaker 1:So I reached out to his principal, mr Mems, and I said he was like let's find a way to get him back in school. So I filled out something called a 504 accommodations request and because he was in diapers, I'm not sure if they fully have something called a toilet in Parra so I'm like okay, I have to find a way for him to be able to go back to school, his school, because that's what he wants. Because that's what he wants, because we're going to give our kids everything that he wants, especially in a situation like this. So I said to the principal I said what if I come every day? And he was like to school every day. I said yes. I said I can come, my job is 10 minutes away, I can come on my lunch break, change his diaper, go back home, I'm going to go back to work. And then he was like I'll allow it, in the nurses office. I said I'll do that. And I did that every day until June Now in that same process.
Speaker 1:Them kids were amazing. I would go to that school every day and he was surrounded by children. They would be playing chess, just I used to take chess to school. They would play chess. If they were outside on the field at recess, it would always be a kid on the side of his wheelchair on this side, a kid on this side of the wheelchair and somebody pushing him in the back and they're just walking around the field. And when I tell you guys, that warmed my heart so much. I sent the principal email and I was like I don't know what is instilled in these children, but to come to here every single day to see that these children love my son, those were his friends.
Speaker 1:Those were his friends and I was like, listen, it's amazing. And I decided that the principal gave everybody hoodies as a gift, because it was just crazy to see that, because you don't really see those things. And so I said, okay, now we starting that the oncologist said that there's a clinical trial with chemotherapy. The pills will be every day, the chemotherapy will be every two weeks. Okay, so I said, okay, how can we do this? But I Didn't know nothing about it. Then, um, and just I was like, okay, I would like to try it. What did they say the clinical trial would do? So they said that the clinical trial would help with the shrinking of the tumor the remainder of the tumor and then, when I discussed it with you say, he said I'm gonna try it.
Speaker 4:So, being that it was a clinical trial, did they have any success rate? Like, was there any? Because I mean, with clinical trials, that's exactly what it is. It's something that you're starting, so you don't know what the success rate would be. Let me tell you something.
Speaker 1:I didn't know anything about clinical trials until I did my psychology and my psychology classes in my undergrad and that's when I learned that the success rates is like touch and go, like it's either you get the drug or you don't get the drug.
Speaker 4:But they don't do a placebo. Yeah, like they do a placebo.
Speaker 1:So they don't tell you which one you're getting, they just put you in. Yeah. So I'm like, okay, but he went every two weeks based chemotherapy. So what we did was we made the chemotherapy on Fridays so he would go to school Monday through Thursday and on Friday he would have the weekend to recover. Nine months on that he went back for his scans in September. When the scans came back, they came back saying that new tumors grew, and this time there were three in the brain, one in the spine and one in the lower back. So when you talk about the success rate of the trial, what did y'all give him?
Speaker 4:So After that did they tell you if he had the placebo. So you still don't know, I still don't know.
Speaker 1:Oh, wow, I still don't.
Speaker 2:And that's something you sign up for.
Speaker 1:They did is like a clause in their contract, you think so it was just you just signing up for the, the trial and signing on to do the chemotherapy. But it wasn't like no stick claw statement that we read or anything like that, because technically, since it's a trial, they really don't tell you, they don't have to tell you. So At that point I said in my mind I'm like so did he get the actual drug Right? And then you hear the stories about how chemotherapy makes things worse. So was it the chemotherapy? What was it? And all they could tell me was the type of tumor that he had had was an aggressive form of tumor that can spread in the type of I'm sorry I never mentioned the type of cancer was astrocytoma. Okay, so that type of the tumor. So you learn the difference between tumors and Cancers and things like that.
Speaker 2:Well, it's not all tumors. What is astrocytoma Like?
Speaker 1:so astrocytoma is the form of brain cancer. Okay, the tumor is. It was a high-grade glioma and if you look at it and you read up on the gliomas, gliomas are the worst type of tumors that you can get. So because it was a glial, it was worse. That's what made it worse and I said okay. The doctor said to me she said so, what do you want to do? In these same moments, I'm also grieving the loss of my brother, my brother, remember, that was murdered literally two weeks Before I found out that now my son has cancer all over now. So when the oncologist was like, she called me. I never forget. She called me and I was in the store and I'm like she's like I need you guys to come in and I said I just buried my brother yesterday. I don't want to have this conversation. I don't. I don't want, I don't want to do this Now.
Speaker 1:Josiah was doing physical therapy, occupational therapy, at home. They would come to the house three times a week. So when I had explained to him that, you know, they said this is what she said, because anytime I met with a doctor, I met with her separately from him, and so I never forget. When I told him that the tumor had came back and they spread. He was like Well, that's why, when I'm trying to stand in physical therapy, I can't. That's why I get tired so much faster. And I said, yeah, that's why, at this point, Do he know what type of cancer he had?
Speaker 1:No, he just knew why he knew that he knew it was Astrocytoma, he knew that it was a phone. He did know. Yes, he did know, because what's the point in hiding it? Now, right, I can't. I can no longer protect you because the kids have internet, so they're gonna look up certain things.
Speaker 2:They're gonna what was Michaela's knowledge at this point?
Speaker 1:Michaela knew that Josiah had cancer, okay, um, so she was still fine with him too. She was still. She was still his sister. She was still are they were. It'd be hilarious to me because he would be like Michaela. So you passed me the remote because he physically can't get up. Like no, I'm trying to do one things for you. And I'm like, oh, can you all stop? He's, she was like, he's always asked me to do stuff. Well, if he could, I'm pretty sure he would get up and do it his own and, um like, so she was still normal. I kept her around for all of the, the doctor's visits and things like that, because Michaela is different. So she used to be like you. Be like Michaela, what you want to be when you grow up. Nothing why. My mom cooks, my mom wants me clothes, my dad buys me clothes. I really don't have to do nothing.
Speaker 4:She got the right idea. That is a smart girl.
Speaker 1:When we would go to the top, like hopefully this experience changes her, make her want to be a doctor, like something. And Tuesday, I still don't think that she knows she's now, she's she. I think she says veterinarian because it's cool, like I think we all said that at one point, right, so she, that's what she says now. But she's like nothing. I don't want to be nothing when I grow up and I can stay home, you cook, okay, cool. So they would still fight back and forth and things like that.
Speaker 1:And I was still. I was still mom, like I still got to be mom. I still got to play, like when we would go to the hospital for treatment. So maybe so funny because, like I have to pick him up to physically put him on the bed, and he'd be like all right, mom, I'm ready. What do you want me to do? Can you put me in my chair? No, do it yourself. And the nurses would come by and it would be like I love you guys's relationship. I say he's my son, he's still my my, this is my son and I'm a witness to that.
Speaker 3:Like I remember, she never treated him different and when he was tired, he wanted he didn't want to do the therapy. You made him do it like maybe no, you had to do it we.
Speaker 1:Jasmine worked downstairs and the his physical therapist at the time would bring him down. He's still of that with with the walker, do you want to take a couple of steps? You're gonna do this and she would. They. They made it out by. They made it outside across the street. I was behind them with a folding chair so that he needed, but she was amazing and he, like he, was determined to walk and do things on it. It was amazing to see. And then, after that Last diagnosis is like everything just went downhill. When was that? One month? So that was October. Again in 2018 and 2018, but it was so it had been a year later it had been a year later.
Speaker 1:I'll never forget. We were in the house. They asked me. They said um, do you want him to do radiation to the brain? I Was no hell. No, not at all. No.
Speaker 3:Do you want to thinking about the damage that it can cause?
Speaker 1:so at this point, I am like Quality over quantity. If I cannot control how long I have my child, I at least want to make sure that he has a quality of life. Yes, so he was. She was like well, can I talk to him? Sure, now, at this point, whatever he says, I have to support it, cause it's his decision, not I. My thing was it's not my body that has to go through it. I have to be there with you. I have to hold the bucket when you have to throw up. I have to be, you know, physically there for you in every way possible, but I don't have to lay on the table and get radiation. So I can't make that decision for you. However, my decision on it is no, he said yes.
Speaker 3:He said yes to radiation Mm-hmm.
Speaker 2:Were you present when they spoke to him about it? Nope, okay.
Speaker 1:I made his dad go because that's where's his dad, and so listen, I made his dad go because I did Everything.
Speaker 1:Yeah, by myself. I did every radiation visit for the whole six weeks, every day, by myself. So I was the one holding the buckets for to vomit, I was the one changing the diapers. I, I did everything by myself. So, and I guess that his dad couldn't handle it but he's our child I didn't go out, I Did. I was able to go back to work until His health started declining and then it was just like okay, I'll Be home again.
Speaker 1:When he went in for the first few doses of radiation to the brain, it was now we're in November and, and because they had to make like a special cast for the brain, they had to we had to wait for the cast to come in. Basically, so by November he did three days of radiation to the brain and it was back to back one, two, three by day. Three. He could not swallow, he couldn't talk, his breathing was shallow. So I remember us. I was just laying in the bed and I'm like something's not right and I called his godmother. I'm like, um, we have to go to the hospital. I called my sister's, let them know. God mom went with us to the hospital and we were there and he did. He apparently he wasn't oxygenating, fine, and this is like Maybe a week before Thanksgiving, and I never forget the doctor was upstate somewhere, the oncologist but she took the time to call and she was like that's when she introduced me to hospice care and she said, kinder, it could either be the three tumors in the brain, it could either be the one tumor that's in the brain stem or it could just be that there's no space and His brain is swelling.
Speaker 1:So I said, okay, what do I do? Well, I'm gonna. I think that you should just start thinking about what you would like to size care to look like going forward. Okay, I want him to come home, bring my baby home. She said, um, okay. Then we had a big round table. We in my family was there and it was like, do you want to sign him up hospice care? I was like, okay, sure, do you want a nurse? Sure, um, and we did that.
Speaker 1:I Said, can I take him home for his birthday? She said, yeah, you can take him home, but just know that home is not going to look like what it's been looking like for the last couple of weeks. Okay, no problem, when can I take him home? I want to give him a party. Because my thing was we're not having a cancer free party. She said, no, you can have a cancer sucks party. Cool, we're just gonna have a birthday party. So then she said you might want to have the birthday party early, in case if he doesn't make it since birthday. So I said Okay. So that's what we did.
Speaker 1:We had his birthday party the day before Thanksgiving. He was not himself at that party, he spaced out. And then I'm like okay, this is what my life looks like now. We after the party it was now, now we get to December and we had a nurse that came social worker, a Josiah, so sure, a house with social worker was amazing. And it was Christine and she would check in. She call text Do you need anything? Do you need me? I'm not working this weekend, but if you need me I will be there. That's correct, we're fine, okay.
Speaker 1:And then Chessiah, I think by like December 5th, he woke up. So two days before his birthday, two days before his birthday, you woke up. It was like like it was so different. Everybody was like so what are you doing for his birthday? And I'm like you guys can come over. You guys are more than welcome to come over. Usually I do pizza and cake for the kids birthdays, anyway, you guys, and that's where you bite it. That was his 12th birthday. We spent it playing Mario Kart, smash Brothers, all of these things, and it was it was amazing in my house, was? It's not that big, but it was full and we were playing video games. And he got to play the video games for a whole month of no issues. No, I'm talking now. He's eating food, he's drinking seven cake, he's having whatever he wants and I'm just like man, we about to have our lives back. Because this is amazing. He's playing video games. Like it was just amazing to see.
Speaker 1:Now January comes, the doctor called. She was like Kendra, what's going on, having heard from you guys in a while? So he's fine, everything is fine. You were wrong. She was like okay. So she said can I talk to him? So I say sure. I said here is this doctor. So he was like hey, dr Crystal, I'll play my video games. So and she was like how are you feeling? I feel fine, I'm good. She was like he's. She said do you have any questions for me? He said yes, when can I go back to school? And she was like well, can you come see me tomorrow? And he said I don't know, you gotta ask my mom. Mom, can we go see her? And I like sure, we go to see her.
Speaker 1:Like every appointment somebody went with me sister, my sister, his godmom, like they were always at the appointment appointments, and he, it was just like she said, okay, well, you look really good, you can go back to school whenever you're ready, if there is day. He went to school Friday. He went to school Saturday morning. We woke up he was like mom, I had her. I said what day was that? That was December 12. I mean, sorry, january 12. He said, mom, my head hurts. I said okay, he's like can we go to the store? I said you have an appointment to get an MRI, so we have to go. I said when we come back we can go to the store. While we're on our way to the appointment, they call and they were like the MRI when she just went down, we have to reschedule. I'm like, okay, so when you want to reschedule for because this is the MRI that the doctor requested to see, like what's going on? And they were like we will call you with the new appointment. So I called the social worker and I said listen, josiah is complaining of a headache. They canceled the appointment to the doctor, so can you send a nurse or somebody out to help with the headache? She said do you want me to come? I said it's Saturday, stay where you are. She said I'm coming. I said no, I didn't ask you to come. I really didn't ask you, god, just ask me to send a nurse.
Speaker 1:The social worker got there before the nurse. It just I was like mommy, I want a bacon, egg and cheese. I was like, okay, I'll go to the store and get it. He was like, no, I Want us to go to the store to get it. I said, okay, but I'm in a wheelchair, we're gonna walk around the corner to the store. He was rolling his side, never forget rolling his stuff around the store, picking up the things that he wanted, ordered his bacon, egg and cheese. Kayla's in the store, somewhere you know it was. It was just like, okay, we get back home, he ate half of the bacon and cheese. I gave him something for his headache and I laid him down in his bed. That was the last conversation I had with him once. I laid him down the bed.
Speaker 1:Then the social worker got there. She came and she looked at him. She's like okay. So she made a couple phone calls. She was putting people in a place because technically she shouldn't have got there before the nurse. But when the nurse came the nurse Guys, I Was in that house like I'm going out tonight my hair is curls, I'm going out. So whatever they need to do, they need to do it because I'm going out. I have not been out, I need to get out the house. She was like okay, kinder, no problem, the nurse comes, you. And when the nurse comes I hear commotion in the room, but I don't get up. I hear the nurse saying just saw you stop, but I don't get up. I don't get up because I don't know what's happening. But then I got up when she said just I stop again, because who are you talking to? That's my child.
Speaker 1:Then the social record comes out Do you have an EpiPen? Do you have this? Do you have that? I said yeah. So I I'm like it's somewhere. I know I have it, it's somewhere and I know I had put it in the closet, but at this point I don't. I don't know where it's at. I just noticed in the closet. So I go, I pull it out the closet finally, and then I get there and he's, he's screaming, his eyes are close. He's like mom, I need you, mom, my Kayla, mom, my Kayla. And I'm like I'm right here because I was right there. And then she, uh, they took the EpiPen because he was having a seizure and they, after they, stuck with the EpiPen. He laid his head back down and it was like he was sleeping.
Speaker 1:So sure it got pulled me and she said kinder, I Need for you to start thinking what you want end of life to look like. And I was like I don't know. She said, okay, I remember you saying that if the time came, you would probably want your side to go to the hospital. Now is the time for you to make that decision. I said I don't know.
Speaker 1:Then she called the oncologist and the oncologist was on the phone. She said can there? We had this conversation. I need for you, I need to know what is it that you want? I want my son to be home. This is his home.
Speaker 1:She said, okay, so I need for you to know that you did everything you could. And I said, well, I need for you to know that you did everything you could too. And she said I'll check in with you tomorrow to see how things are going. I said, okay, now I went back to the social record and I was like what do you mean? She said it could be days, it could be weeks, but I don't know. But I've seen this before.
Speaker 1:I said, okay, cool, got on phone. I called my sister. I Called the family and I just was like you guys need to come. I call my grandma. I was on the phone. My grandma was like I'm trying to get to you right now. I try to get to you right now. And, and, um, my auntie came. Mom is an RN and my sister's, my mom was there. My grandmother's sibling and her kids was there. It was just like a revolving door and I'm there with everybody I'm sitting in the room.
Speaker 1:And then my boyfriend at the time he was he came and he was like let's go for a walk. And we went for a walk and then, after we went for a walk, I said to the social social work is still there, stayed, I said. She said I'm gonna get him another nurse to come check out his vitals and Everything. I was like, well, if you can, can you get him some IV fluid, cuz I know he didn't eat all that. And she said, okay, so I Go, I I'm sitting in.
Speaker 1:I'm like, okay, the nurse comes, nurse checks his vitals. He said, um, his vitals are good, he doesn't need the oxygen. Take him off of it when he wakes up. Reminds him of where he is he may be in a trance. Just remind him of where he is. I said, okay, I could do that, I can do that. I said, can you? He was like I could do his IV fluid. He was like I know, you know what you're doing, but let me start it for you and then I can be on my way.
Speaker 1:I Went to get the bag cuz I had the stuff in my fridge. I went to get the bag and when I came back, my auntie's standing there and the the nurse and Just so it goes. They look at each other and after they look at each other, he was like I didn't do it, I didn't, I didn't touch him. He's like I didn't touch him. I said, okay, my aunt goes. I need to talk to you for a second. So that's okay. The nurse goes. I can come back tomorrow and put in and I just don't feel comfortable putting in and at this point that's okay and I'm not.
Speaker 1:We went in my bedroom and she said um, in the ER, when we see this, it's either because someone has had a seizure or they are going to take their last breath. You need to go be with your son, and I did. I went and I lay down and I write moms around him. Now I just started talking to him and cuz, I didn't know if he could hear me, I didn't know what, but I started talking to him and as I'm talking to him, I'm saying like you know, I love you, I love you so, so much. But what I don't want is For you to fight this fight for me. If you are done fighting this fight, I Don't want you to fight for me no more, because that's the type of kid he was, like he could be laying there and he He'd be like are you okay, mom? I don't like Bro, you don't want laying in the bed, I'm okay If you're okay. I'm okay. He's worried about me and I'm like so don't fight this fight for me anymore. But if you do not want to fight anymore, I love you so much. If family loves you, dad loves you, everybody's here. We love you, sister Love you, we all love you. But if you are done fighting this fight, please Don't fight for me anymore.
Speaker 1:He did one more breath and then that was it. I Got up. I Woke up the room, my aunt walked over to check his vitals. I know she did because after I was sitting in the living room and they were like she was like he's not breathing I signed a DNR. So it was nothing that she could do or anyone can do, because I signed the DNR. Now, I signed the DNR because, regardless to whatever, he would still have cancer. The cancer would still attack his body. You're probably gonna do more harm than good trying to resuscitate him than Helping him. So when she came out Because the social worker had left once the doctor said that his vitals were good not even 20 minutes gone, and I called the social worker and I said you need to come back. She came back. The same doctor came back and she was like I don't know what happened. I Said it's not your fault. The doctor who said his vitals are good. He said I Don't know. I said thank you and then After that, um, I Reached out to the funeral home.
Speaker 1:They kept in contact. So they kept in contact after we did my brother's funeral the lady you would assume you would have thought that that was her Unsung godson, whatever, cuz she would just check in with him. She showed up for his birthday, so she was. I called her. She was like hey, how's my boy doing? And I'm like I need you to come. And she was like, is everything like? I said no, everything is not okay. She came.
Speaker 1:I called his principal because, not for nothing, it's Saturday. Yesterday, which was Friday, he was in school with his friends. He was fine. So Monday morning those children are gonna be expecting to see their friend again. Hold the principal. And Mr Mem saidI Can't believe it. He said I'm so sorry, mom, so sorry. I called the AP. She was like hey, I'm just looking at a picture of him, how's he doing? I'm like Miss pause, he's not here. And then I called his dad and I was like I asked you to come this morning when everything started happening.
Speaker 1:When the lady came from the funeral home, she they because he was on hospice care. They could just take him to the funeral home. He didn't have to do it all time to report. They didn't have to do nothing, they could just take him straight to the funeral home. So she was like, okay, I remember her Rolling him out the apartment and I was like he needs his coat, he needs his hat, it's cold.
Speaker 1:After that I was just like I was existing. I was high for the majority of the time afterwards because I couldn't function. It was my house, it was a revolving door, it was. I still had me Kayla. I still had to exist. That was Probably the hardest part.
Speaker 1:And I've been through some shit.
Speaker 1:Like you know, I've been homeless.
Speaker 1:I've been. I had to sign when I was 18. So I didn't really know how to navigate life. I didn't have much, but I knew that I had to be a mom. And then I had me Kayla and then it was just like, okay, I gotta figure this out one way or another, have to figure my life out. So it's like I've been through some shit and I've been through a lot, but that I I would not wish that on any parent, even if I hated you, because you don't come back from that. And even now, until this day, I feel like I'm a different person. Uh, am I any worse? No, and am I any better? Yeah, but it's. It's hard to function in a world where I have to actually live without my son. Like why couldn't it have been me? And I and I used to say things like I have life insurance, my children will be well taken care of if I'm not here, so why couldn't it have been me? He had a whole life ahead of him to live, and now we're here.
Speaker 3:How do you, how do you do it?
Speaker 2:There's no bounce back.
Speaker 3:Like I don't understand, like I Like I told you the other day I said you have like a supernatural strength about you from the whole thing, the whole time, that it was just so. I was in awe because it's just like you never showed him that you was sad or that you Were scared. He never saw that he never saw that.
Speaker 1:He never saw that because I wanted him to be positive. I wanted him to see that we can right no matter what we still can. What I did was I took some time off from school, but then, once I got back into school, I was back into school. Now, a couple days after I buried just, I found that I was pregnant with my son, cameron. Wow, that saved my life because, like I said, I was high Every single day and I couldn't could shake the feeling. You had no idea what do. And then, now that I'm pregnant, I have to eat, I have to take care of myself. Yes, I'm stayed. They they were. They found a way to still give me some type of antidepressant in those moments. I Started taking care of myself because I was pregnant with Cameron. And then I had Cameron in September. So, literally, I buried just I in January, the ninth month of the year, september, I had Cameron and Even. Even that Couldn't heal me. Like people could be like oh yeah, baby gave you a baby. No, he didn't.
Speaker 3:No.
Speaker 1:No, he didn't give me a baby, but I'm happy because I have. Now I have a more of a reason to actually take care of myself. Like Michaela was there and Put it, and I don't love her any less, but it, like I said, I have life insurance. My children will be well taken care of. I, when Cameron was six months old, I enrolled back in school. When I tell you guys, I was taking five classes, working full-time Cameron, michaela, that's what I've been doing and so. So that's how, like I, I literally keep myself really, really busy all the time, to the point where it's like, okay, maybe I do need to slow down, maybe I should chill, maybe I should stop. And through that I was able to finish my degree in psychology. I Graduated to a role University with my bachelor's in psychology, with the Congratulations girl.
Speaker 1:Because, but let me tell you, the only classes. Because while just I was sick, I was still enrolled in school and I was still going to school, like I would have a babysitter come to the house with the kids and I would go, but three classes. The only time I've ever failed any classes was when just I passed away because I didn't take the final and they didn't. They gave me a three-month grace to come and take the final but I couldn't bring myself to do it. But they didn't wipe it off my record right. So that was like the only. Those were the only. It was two classes. Those were only failing marks that I've ever gotten.
Speaker 1:So for me, I'm like y'all can't just take it off like and give me grace because I wanted, I was like I Deserved this, like you know, I showed up, I was in class, I did, did them in terms, I did all the work, I did everything. Just because I missed the final, I felt. But I graduated and then I, once I graduated, it was just like okay, I know that I did this for him because I I needed. One thing about me was I always wanted to show my children that I didn't want to be that hypocrite parent Like you. Know how our parents probably didn't graduate high school, but yet you still wanted us to do it, right, right. So I knew that my mom didn't graduate high school. So I'm like nah, I can't be that hypocrite parent like you. You gotta graduate, you gotta go to school, you gotta do what you gotta do. And so I was still determined to show him Micaela, now Cameron, that we still can. And then now I'm a graduate student, nyu, woo-hoo.
Speaker 3:Society will be very good.
Speaker 1:He would be really really fast. Yeah, so you know, I'm still working, I still go to school and then I'm still taking care of kids, like they. I probably Micaela's probably checking my location right now. I think that's all our kids it's like why is she? Okay, cool. But you know, that's, that's the how I just keep myself really busy.
Speaker 4:Yeah, have you given yourself some Form of a break?
Speaker 3:No.
Speaker 4:So you're still going.
Speaker 1:I am I. So I finished my semester at twirl in um January Last year and then I got my acceptance letter to NYU in March and I started NYU. I may, I. And then I'm still classes. I got class on Monday, but you know, I know for sure that I didn't grieve properly. I know for sure that I didn't give myself grace. I know for sure that I didn't take time to just follow in my grief, because I Lost your sire four months before that, I lost my brother. So, and then I Knew it, and now that I am realizing that, because we just hit the five-year mark for just sire, I'm still stuck in my grief.
Speaker 1:So a lot of times I just feel like I'm existing. I don't know how to build new relationships. I don't know how to form new relationships. I don't, I can't like it's, it's. It has hindered me from even wanting to date even, and it might be weird, but for me, why do I have to meet somebody? For them to just die anyway? And I really shouldn't think like that, right, cuz I wouldn't want me to think like that. You know it's, but it is still gonna be in the back of my mind, like it's like.
Speaker 1:And then we're at this age where Some people just die randomly and you just really don't know you done unexpected deaths and it's like my heart can't take another death. My heart can't take it anymore. I lost my brother, I lost my son, and Losing my son was like the hardest hit for me because I still have to be here and he's not here. You want me here why? And you know people will say God has a purpose for your life. I don't give you nothing more than you can bear, but I feel like, all right, I'm done. Take me off that list. Don't put me now for nothing else, because I can't take it anymore.
Speaker 4:You don't want to be the strongest photo.
Speaker 1:No, I don't want to be the leader. I don't want to be nothing. I don't want to be, I Don't want to be associated with strength. And it's hard. It's hard not to be because I've been through so much, and that's how people see you and that's how people see me.
Speaker 3:Yeah, and you know so I want to be able to be vulnerable.
Speaker 2:I want to be me.
Speaker 1:I want to be me, right, and but all I get is you're so strong, I don't know what I could have done. Listen, I Still don't know what I would have done and I've been through it right I still don't know if I would have done things differently. I don't. I don't know much about anything at this point. I just know that I really feel like I'm just existing and, and when it's my time, it's my time.
Speaker 2:I think people need to hear that because, again, I Don't, I don't want to imagine going through that, don't?
Speaker 4:Like that's exactly what I kept on having to tell myself, like, don't put yourself in that shoe don't, but people go through it and they're going through it, people actually.
Speaker 2:You're the same way you just said, like I'm here.
Speaker 3:What advice would you give to parents out there who are in the same situation? Man?
Speaker 1:The hope is that For parents in this situation Situation ask a lot of questions, always ask a lot of questions, because no question is stupid. Like know what you're dealing with. Like I felt like in the beginning the doxas was trying to shelter my feelings, because what I didn't mention was I took your side to Memorial Sloan Kettering for a second opinion. The second opinion was if we treat your son, he's never going home.
Speaker 4:Whoa.
Speaker 3:Whoa Well hospital.
Speaker 1:They actually do the treatment on Cohen, the children's hospital, oh, come on, but Memorial Sloan Kettering is supposed to be the best. Wow, best of the best.
Speaker 4:Whoa, what a response.
Speaker 1:That was the response I got. If we treat your son, he's never going home. We give him six months. Oh, Bedside manner, Horrible. As I'm speaking to them, Josiah's in a different room. When I went to the different room he was like when are we leaving?
Speaker 4:He couldn't wait to get out of there.
Speaker 1:He felt it. He didn't see the doctor. He felt it man, it's you, yeah. So after that moment where that doctor said those things to me, I called the oncologist and I said what are you not telling me? Because you missed the part where he could have six months to live. She was like well, I did say that the tumor, this type of tumor, is aggressive. I did say that this type of cancer is aggressive, but I just didn't say how. I said okay, going forward, tell me everything I need to know, don't shield me.
Speaker 2:Yes, because you have to be prepared.
Speaker 3:Even what you think I don't need.
Speaker 4:Yeah, right, you're going to be as prepared as you could be. Right, right, in a situation that you can't change, you want to have some type of knowledge of where this could go, and you got to get yourself mentally prepared for that. Yep, because you'll never be mentally prepared.
Speaker 1:You'll never be mentally prepared, but you still would like to know.
Speaker 2:Yeah, it's not on you to tell me what I can handle or what I can't Right.
Speaker 1:So it's my baby. Those moments I was just like you know what. I'm going to ask a lot of questions. I am going to say a lot Decide. You got questions and I'm going to find out how we would feel going forward. So to other parents, I just encourage other parents to ask a lot of questions. You know, try not to shield your children in any way possible, because they're really living this situation. As much as we would like to be the protector for our children. You know how they say accept the things that cannot change.
Speaker 1:Yes, and like I said to you guys, it was more for me like quality. It became quality of quantity. If I cannot control how long I have you for, I at least would like to control the quality of life that you may have Me personally. Y'all not cutting into his brain. Y'all are not doing this radiation. Because what kind of quality of life.
Speaker 1:I did not have to see my son in a vegetative state. I did not have to see him with any tubes or anything in him. I didn't have to see any of that. It was beautiful. He was never like.
Speaker 1:I said that one time where you know it was. They were like, oh, this could be it and it was more like him sleeping and then out of sleep. That was it. But I am forever grateful that we did not. I did not have to see those things and I see different cancer stories and things like that online and it's just like my heart goes out to this family and my heart goes out to the kids, my heart goes out to the moms, my heart goes out to the dads, because these are the things that you guys are.
Speaker 1:Actually. I know what it's like and it's not a great feeling. You're not easy, you're not sitting, it's not a chill for moments and it's not a moment that just passes on. But there are resources out there that you never know, that are out there. There was this organization called Friends of Karen. They paid my rent Wow. So when I was home and in the hospital with him, they paid my rent, the children, and now, to this day, the children got to go to camp for free. They still go to camp for free and even though Cameron was not here when Josiah was here, he is still Josiah's sibling, so he gets to go to camp for free, because the camp is for children with cancer and their siblings. What's the name of the camp Surmised Day Camp they are. They bust them back and forth from Jamaica to Windach Milan.
Speaker 1:OK, so it's out there and this is out there, but Josiah was able to go to camp, mikayla learned how to swim at camp and Cameron is now giving them a run for money at camp. But I am grateful for these type of resources Because I never knew you never know that these things are out there for families or anything like that. Just encourage them to look for them. And I just would encourage to speak to your social workers, because social workers that's what they're there for. They're there to help you find resources for your family. They're there to help you so that you won't be homeless in those situations, because this is a situation that you really can't control. They are there to find resources for the kids and my kids go to camp from school ends on June 26. Camp starts on June 27. To August 18. So it goes and I'm able to work in the summertime because of the camp and I get a little bit of peace of mind. And, like I said, cameron never met with Josiah, but he still gets to go to camp because he's a sibling. The camp is for kids with cancer and their siblings and throughout the year they check in. Hey, I'm just calling to see how the family are doing. Can't wait to see them again. So it's a lot of resources out there for the families and you just have to look for them. But that's what social workers are there for Social workers, especially social workers in that particular field. They're there to help you find resources. I think that I even got my phone bill paid.
Speaker 1:We did Make-A-Wish, so Josiah's Make-A-Wish was really cool. We went to Nickelodeon. We went to Nickelodeon. Now we went to Putacana. It was so beautiful. It was so beautiful. He just wanted to get on a plane. And this is how I tell you guys that he thought about me. He knew that I was saving money for us to go to Putacana. So that was his wish. He wanted to get on a plane. He didn't care if they just took him and sat him on the plane for a couple of hours.
Speaker 4:He was fine, he just wanted to be on the plane.
Speaker 1:He just wanted to be on the plane, so that was his wish, and he was just like they were like, well, anything else, he had to put three wishes. He was like I'm going to meet LeBron James and I want to do this and stuff like that, but then he ended up meeting Lamar Odom, so it was.
Speaker 3:Nick Cannon.
Speaker 1:And he met Nick Cannon. So it was like he had moments where he had really good moments. And this is why I say a lot of times to parents don't say maybe next week, maybe next month or maybe next year, not do it. Do it Because you never know what could happen. So I have no regrets when it comes to raising my children, because we did stuff. We still do stuff with the ones that I have left.
Speaker 1:But with Desire we had the experience of going to Kutukana, we went to the movies, we went to parks, we went to barbecues. Like we hung out. Desire is very family-oriented, loved being around family. Loved it more than me, but he loved it. So we did those things because that's what he wanted to do. And even before he got sick with cancer, we traveled to Disney twice. I remember I took the kids to Disney for four days and they had the most pouty faces on and I was like no, they didn't want to leave. So the next year we went back for 10 days. I was homesick. I was like I want to go home.
Speaker 4:I was in there like I want to go home. I don't think I could do Disney. You can't, don't do it, don't do it. Four days I've done it.
Speaker 1:I thought that I was doing them a favor by doing it for 10 days, but then I was just like when are we going home?
Speaker 1:Like I'm ready to go, but they loved it. It was more for them, so they loved it and it was amazing. So I have no regrets as a parent because I did things with my children. We did a lot. They make those memories. I encourage parents to make memories with your children because you never know what can happen, and I'm not saying that your child might get sick or nothing like that, but yo, so they can remember it. Life happens, you might go, you might go, and then what are they going to have? All right, guys.
Speaker 4:I'll stop being a grinch.
Speaker 3:So, Kendra, where can people find out more about Josiah? I know you have.
Speaker 1:Instagram for him. Yes, yes, yes. So I have not been on it in a while Because, to be honest, I was constantly in on taking a step back from it and deleting it.
Speaker 1:And I, legit, was constantly in because and I'll tell you why I was constantly in it when we started his Instagram page was myself, my sister, myself, my sister and his godmom. So I was like you know what? Me and his godmom don't speak anymore and she used to do most of the updating and things like that. So I was just like, well, am I really doing this for them, updating this for them, or am I doing this because it's something that Josiah would want me to do? And I know that it's something that Josiah would want me to do, and it's not for anybody else, it's for them, because you'll find that sometimes, when I go on it, it's messages from the students, the kids that went to school with him. Hey, mom, just checking in.
Speaker 1:Or hey, last year we got a message saying that they never got to say goodbye to their friend and they wanted to know where he was. He was buried at because they wanted to see their friend. And I'm like, oh my god, this is crazy. That's hard. So, even in those moments, it's hard for me because he would be 17. And this is what you guys look at as 17. And I don't have him here, so sometimes posting on Instagram for the friends, the memories I love, the memories I do, but it's like here we go again.
Speaker 2:It rehashes me.
Speaker 1:It rehashes a lot for me. So his Instagram is the Josiah Strong Legacy and you can go back. It'll go back from the first day, one of our journey until this year. When it was last year September brain cancer awareness, I did post for his birthday.
Speaker 3:I think yeah, you had everybody saying a message for him.
Speaker 1:Yes, so, yes, I did post for his birthday. So the only thing that I did not post was the 12th, because I usually post on the 12th of January, for because that's the day that he passed away. Now I didn't know what to post this year for the 12th of January, and I'll tell you why 12, 12, 12. Those are Josiah's numbers, right? Josiah was born on the 12th month of the year. He made it to the 12th year of his life. He passed on the 12th day of January 12, 12, 12. My niece had a baby January 12th at 12, 12 am 12, 12, 12.
Speaker 1:So I was just like hi, josiah, thank you for this message. And I didn't know what to say. Like I posted on my social media because and I posted this video, this is one of my favorite videos, josiah we were in the nurse's office and I'm there to change his diaper and I think it's on his page. But we were in the nurse's office, I was there to change his diaper and we were talking and he said, yeah, cause I shared my popcorn with her. And I'm like you shared your popcorn with a girl.
Speaker 1:And he was like, yeah, mom, stop recording. And I'm like, no, I need memories. Like, no, I gotta show you this. So he and we're laughing. So I said so what does she look like? And he was like open up your phone and I'll show you the pictures, cause I have a couple of pictures of him and his classmates and he was like I'll show you. And I was like and then when you show me her, can I go up to her and be like do you like my son and I? He was like don't embarrass him, he was like no, you're not going to do that.
Speaker 1:I was like okay. So you know, I've kind of been struggling back up if I wanted to keep the page going and stuff like that. But you know, lately my days have been a little bit lighter because Cameron will say things about his big brother, josiah. I don't drill into him that this is your brother, I don't. He knows. He knows. There was even a moment where they connected on January 12th of last year. So every year on the 12th I get a positive message from Josiah in some kind of way. January 12th of last year we're going to bed.
Speaker 1:Now I always record Cameron because, one, he's really really smart. Two, you never know what he's going to say to you. So I was like did you have a good day? I'm recording him. I'm like did you have a good day at school today? He's like but I saw laughing. So I said why are you laughing? So he's like Josiah is saying ha ha. I said oh, why are you laughing? Josiah is saying ha ha. Y'all the look on my face. I was like why are you laughing? Josiah is saying ha ha, wow. And then he points he's like ha ha ha.
Speaker 3:And he was three at that time, right Was last year. Yeah, he was three, wow. And.
Speaker 1:I said Markayla, come ask Cameron why he's laughing. And she comes in the room and she's like Bebs, why are you laughing? It was like Josiah is saying ha ha. I said. I said you see Josiah, I see him, he's jumping, oh my God. And he climbs up, gets off the bed and he starts jumping. He's like ha ha, ha ha. And I'm like, nah, this is some next level shit here and I don't want to be a part of this I don't.
Speaker 3:Josiah, don't be scared of mommy like that. I got out of bed.
Speaker 1:I went to the kitchen, I drank some water and I was like I think I could go back in there.
Speaker 4:I went back I don't mean like you, put him in the bed. I said I don't believe.
Speaker 2:Okay, you got this.
Speaker 3:Mikaela, you're in charge right now. True story.
Speaker 1:I was like Mikaela ask him. She was like Mom, I'm not going to keep asking, I'm like you leaving me on my own with this one.
Speaker 1:I can't do this, and I said but I went in the room and I was like, josiah, if you are here, obviously I just want you to know I love you and I miss you so much and I thank you for coming. So, and that was on the 12th of January. So in those moments it's like, oh, okay, he's okay, he's okay. We were walking to school the other day, camron runs and he just throws his hands behind his back and I'm like Josiah ran with his hands behind his back. So I said, off, where they do that Sonic? Yes, just Camron on, on nothing about Sonic. So I said what he was like I'm running, like Sonic, let's go, mom. And I'm like, wow, no, not going, I'm not going. So it's like moments like that that I have where I'm like, okay, he's okay, like he's okay.
Speaker 3:Well, I'm glad that you know you're able to have those moments and smile and laugh about it and, you know, be present with the kids Like if they, you know, when they experiencing that, you allowing them to experience that. And, kendra, I know you're tired of hearing that you're strong, but I think you're one of the strongest women I've ever met and I really thank you for sharing your story with us.
Speaker 1:Thank you for having me. I love talking about my story. I love talking about my kids, love talking about Josiah, because Josiah gave everybody strength and just watching him go through it, even the messages I get now, it's like Josiah was the man. I think about him all the time. Yes, he was Well.
Speaker 2:Once again, yeah, thank you, and it's the Josiah strong.
Speaker 1:Yes, the Josiah strong legacy. And it's not spelled J-O, it's J-A-S-I-H. No matter how many times you say J-A, they still put a O, of course. There you go.
Speaker 3:Thank you for coming again and Damn it yeah.
Speaker 2:I'm sorry, I didn't speak much, I was just trying to you know what I?
Speaker 4:think it's a lot and I have to continuously tell myself don't do it, don't do it, don't do it.
Speaker 1:No, don't do it If I'm not doing it, you can't do it.
Speaker 4:I know. That's why I was like I can't, because I didn't want to give you no, you're, I'm not a crier much.
Speaker 2:You were just like quit it.
Speaker 4:The thing is that I'm not really a crier either, but you always think about I am.
Speaker 2:I couldn't look you away sometimes, I know.
Speaker 4:I guess I understand you. I was like calm down.
Speaker 1:No, but you come to an understanding. We're all parents here, right? So it's like, as a parent, you wouldn't want to experience anything like that and I wouldn't want you guys to experience anything like that.
Speaker 4:So it's like but to hear another parent, anything is fucking possible, but you never know, no, but I understand, like, because you were saying you know like you had him when you were 18, right, I had my oldest son when I was 18. So just like, and the growing up with them, like that's your BFF, you know Like you grow up and that's your son, but that's also almost like you know, that's my little BFF, that you know like you're almost. They used to always say, oh, you and Ruben look like siblings, right, Because we grew up together, Because we grew up together. So the understanding I'm just like Whoo, yeah, yeah.
Speaker 2:Yeah. Well thanks again.
Speaker 4:Thank you so much. Thank you, guys, for having me yeah.
Speaker 1:Did I talk too much?
Speaker 4:No, no, no, no, no, no, no, not at all I'm going to choose when to talk, because I couldn't even speak.
Speaker 3:We have a good timing because we have until.