SPEAKER_00 0:00

Hey village! Before we dive in, if you haven't already, hit follow on your favourite podcast platform. It takes two seconds, it costs nothing, and it means the world to me. Right, let's go. Hi, I'm Meva, and this is Raising with the Village, a podcast where real parents share real stories so we can all feel a little more connected in this wild journey of raising children. I want to start with something that Monique said near the end of our conversation. Something that stopped me in my tracks. She said, My choice is my choice. And your choice is yours. Simple, quietly said, no aggression, no agenda, just kindness. And I think that is the perfect place to begin. Because here is something I have been sitting with since we recorded this episode. For the most part, most of us believe that we're open-minded. We don't think of ourselves as judgmental. But it's possible, very possible, that we are more judgmental than we realize. And not not from a bad place, not intentionally, but simply because our beliefs live inside our own experience, our own circumstances. We can only see as far as where we have stood. And Monique taught me that. Today, Monique shares her story of becoming a mother, of noticing early on that something wasn't quite right with her child, and of not being believed, of fighting to be heard by the very people who were supposed to help her, of eventually discovering that her child had been born with a mild form of cerebral posy, and of taking matters into her own hands when the system let her down. Monique is not mainstream. She questions the world around her. She challenges what doesn't convince her, and she refuses to accept an answer simply because it comes from authority. And that means she's not always convenient to deal with. She rarely takes the path of least resistance, and she will not stay in a box that was never built for her. But what she asks for, it turns out, is not unreasonable. It is just inconvenient. And those are not the same thing. Some of her choices throughout this story may not have been yours. Some of the responses she received to those choices were frankly shocking. But whether you would have made the same decisions is not really the point. The point is that they were hers to make and they deserved to be respected as such. So when you listen to this episode, I want to invite you to listen with openness. Listen with kindness. Because Anika is not here to convince you of anything. She's not asking you to do what she did or see the world the way she sees it. She simply wants to share her story. And she wants us, all of us, to feel a little more empowered to question, to research, to challenge, and to dare to believe that maybe, just maybe, there is not only one right way. Here is Monique. Hi!

SPEAKER_01 4:23

Hi. How are you? I'm well, thank you. How are you? I'm very good, thank you. Good. I'm so excited to be here. I'm excited to have you too. Thank you. Yes, it has.

SPEAKER_00 4:32

So shall we start with some introductions?

SPEAKER_01 4:34

Yes. Who are you? Okay, I'm Monique. Um I'm a mother of one. Um, I'm a daughter, I'm a sister, um, I'm a friend to many. Um and just yeah, just living life, trying to be free, um, adventurous, um, enjoy travel, um, and just trying to navigate through motherhood in all honesty. Um, I've been an auntie for many, many, many years. Um, I've always raised children around me since I was young. Um, I've been a godmother for many years as well. Um, but I'm new to motherhood for myself. So it's just a journey and um just learning. Yeah, everyday learning.

SPEAKER_00 5:26

How has it been? How was the beginning into motherhood? Because obviously children, young children were not novelty to you, but having your own is a very different ballgame. Very different, yeah.

SPEAKER_01 5:43

So how is that? Great question. Um, I think that's such a good question because coming into motherhood, I was kind of just like, oh, I've got this, you know, like my my first nephew was born when I was 11, just just after I turned 11. Um, and so having like newborns around me and and cousins and stuff, it was just that was just always something that I was used to. So I think throughout my pregnancy, although I was having like so much physical and emotional changes and mental changes, I was kind of, I definitely took it in my stride. Um, I had a really wonderful pregnancy and I just enjoyed, yeah, coming into motherhood in that way. Um, and then she was born, and then yeah, all the challenges that you just don't prepare for started to come to our front door. And then all the things that we did prepare for didn't happen. So yeah, it's just, you know, yeah. Um that didn't happen. Well, we it's so difficult because you know, you go to the your midwife appointments and you have a birth plan and you know, they make it seem like this plan is your plan, and that's exactly how things are gonna go. And it's gonna happen because it's your plan, right? And then it doesn't. Um, so yeah, just everything from that point, I think, onwards. Um I was very active throughout my pregnancy. So I stayed going to the gym, I stayed swimming, um, I was very mobile, and they said that would help baby come. I was adamant, like so sure she was gonna be early. She was late. How far long did you go? Two weeks. Okay. Yeah. Just over, just over. Yeah, I was I was 14 two days. 14. So I was two weeks, two days.

SPEAKER_02 7:45

Wow.

SPEAKER_01 7:45

Yeah, so 16 days in total, but on, you know, they do by weeks, so it was two weeks, two days. Yeah, that was the start, I think 16 days before that, when I realized, okay, this is not going to plan at all. And then, yeah, it was just a downward spiral from there, really. We'd planned a lotus birth as well. And um, so when you keep baby attached to their placenta and you let the placenta fall off naturally.

SPEAKER_00 8:14

I had no idea that's what it was called.

SPEAKER_01 8:15

Yeah, it's called Lotus Burr. Yeah. So we did a lot of preparation for that. And we still had our lotus birth, um, but it was very different because I ended up having an emergency C-section, which I didn't prepare for at all, never had any conversations around the options of a C-section. All of my checks were just like spot on. So there was never any at any time for anyone to say, oh, maybe, or you know, even when I was overdue, baby was still fine, I was still fine. So there was never any um, like through sweeps and stuff, any reason as to why I don't know that that would have even been an option.

SPEAKER_00 8:56

Were you induced at any point?

SPEAKER_01 8:58

No, so I didn't want to be induced. I still wanted to go through um natural birth process, but then because I was so overdue, so when I started, when I went into labor, what I thought I was going into labor, but it was like pre-labour, um, my waters didn't break, but we're both first-time parents, so we didn't really know what was going on. Um, pain's getting intense, it's becoming more frequent. And because I was so many days overdue, um, we went in. And at first, they actually told me that we could go home. Like, you're not ready, your baby's not ready yet, go home. And so we was like, all right, we'll go home. And just literally, just as we were leaving, um, they were like, actually, you're like really far overdue. We're gonna have to keep you in. Um, if I remember correctly, they did book me for an induction, but um, I didn't want to be induced. So at that point, they were like, if they let me go, I'm probably not gonna come back until baby's ready, right? Um, and they did a lot of checks. And then uh yeah, I was monitored for the day. Um, there was then they started the the talks of C-section, and obviously we were just like, yeah, no, like that's not the plan. The plan is this is the plan, and we're just gonna wait for that. There was a lot of, you know, baby's heartbeat is changing and so on and so forth. But that those conversations came a lot later in the day. Um, because obviously at first they were like, you can go home. And so when they started to say that, we were just kind of like, is it though, or is it that you just want me to go for a C-section? So we was really like, um, I would say that my both my partner and I were very determined, and we've been and were and still are very determined to determined to um keep our child's health in our hands and um like be sure of any decision that we make for our child that it's our decision and that we're not influenced or forced to do something that we are just actually not comfortable with. So um yeah, we were playing blackjack for most of that day, just like chilling. Actual blackjack. Actual blackjack, like he went and got cards, and I was like, yeah, I'm I'm actually about to badge you up on some blackjacks right now. So we had a couple rounds of blackjacks. I think um we traveled a lot in my pregnancy, and so we were keeping like a tally. Yeah, in my pregnancy, I was on a winning streak, so he decided to take the opportunity to try and beat me, didn't work. Uh yeah, and yeah, the nurses literally were coming in and they were just like, but I remember one nurse was like, I can't actually believe what is going on here, and I was like, Yeah, like I'm just waiting for my baby to come. And so we're just playing some card games because they wouldn't let me like walk up and down, and like I said, I was so active, sitting still. That was like the first time. That day that I gave birth was like the first time that I'd actually ever sat still, and so I was just like, just bored to be honest, with twiddling my tharms. Of course, I was having labour pains, but just didn't really know what else to do. So we yeah, we were just playing blackjack. We wasn't sure if um the heart rate changings were just a way of getting us to have the c-section um or if there was actually a change in our heartbeat. And we did later find out that there was. But again, even after um being quite pressured into having a C-section, I still was quite adamant that I wanted to have a lotus birth and I wanted her to stay attached to her placenta. And that was more so just about the research that we had done, the health benefits that we'd researched about it. And it would just really aligned with what we wanted to do for her. Eventually, because um, believe it or not, the doctor wanted to go home. He wanted to come off shift because his shift ended at 8 p.m. He made it very clear like, yeah, my shift is ending soon, so we need to do this like now. Yeah, it literally was that. Um, yeah, that's a whole story in itself. There was um, yeah, just so many people that shifts were ending. And so because we'd been there all day, we went in at 10 a.m. And they'd been trying to get us to do a C-section probably from about like 12, 1 o'clock. And because we I wanted to just wait and see how baby was responding, and like I could feel baby moving in the same sort of patterns and taking naps at the same sort of times. I was quite confident that I was well, baby was well. But eventually the pressure was making me feel uncomfortable, and I knew that that was gonna change and have an impact on baby. So um, yeah, we ended up uh going ahead with the C-section, but I won't I would I wouldn't sign the paperwork until they agreed to keep her attached to her placenta, um, which was a long process within itself.

SPEAKER_00 14:07

Is that not a common, is that not common practice when you had a C-section?

SPEAKER_01 14:11

Um, I guess not. Like, I would have thought at the time and even now, because we are going through um some um legal action around some other bits as well. But giving birth naturally and then having to birth the placenta is like even if you think about it, it sounds a lot harder than them cutting your baby out and also just bringing the baby out of the placenta. So at the time to us, it was just like if you're gonna cut my stomach to take the baby out, you just have to take her and the placenta out too. It should be easier for you, essentially. Um, it just wasn't, yeah, I guess it just wasn't a common request and just, yeah, not common practice for them. I think a lotus birth in its entirety was quite a um, which was quite surprising to us, was quite surprising to them. Um they was just kind of like, oh my god, why? And they didn't really seem to know much about it. And um I remembered my me and my partner having this conversation like whilst we was in the hospital, like these are the people that are bringing babies into the world, like surely they should know about all aspects of birth. Um and it was a part of my birth plan. Um, and they'd had my paperwork from like 10am. So I just assumed at some point that someone opened that birth plan, yeah, and um actually looked at the plan and maybe had an idea, but we get to like 4 p.m. and still people are like question marks above their head, like, what do you mean, Lotus birth? What is that? So yeah, that was an experience in itself. And then um, yeah, we so we had her, she was birthed with her placenta attached and her placenta stayed attached until it dried up naturally and fell off. And then it was just, yeah, so much, you know, the breastfeeding, just thinking that, you know, because you've now given birth to a baby, you're just gonna be able to like put the baby on your breast and then they're just gonna drink, right? And it wasn't like that. But I did have a lot of support. I had a lot of family around me who had already had children, a lot of friends. Um, my mother, some of my cousins that are cousins, but they are actually my best friends as well. And um, they just was able to come and give me some really good advice in terms of latching. And I actually didn't get much support in the hospital because um her lotus birth was such an anomaly to them in the hospital that everybody, like students, everybody was coming not to check on me and check on her, but actually they just wanted to see the placenta attached to her, which was quite disappointing actually, because it meant that the conversations that should have happened didn't happen, especially because a C-section wasn't what I planned for. I ended up being readmitted because there was a lot that I just wasn't told when I should have been told, because yeah, I guess they were just maybe distracted with the fact that um she was still attached to her placenta. Yeah, so there were a lot of checks that were supposed to happen that didn't happen. Yeah, I was you or on baby? Um both, both, yeah. Um I was released um way too early. You know, all the things that you learn I learned afterwards, after being readmitted, which wasn't a great experience at all.

SPEAKER_00 17:39

How long did you stay in the hospital um originally?

SPEAKER_01 17:44

After birth, less than 24 hours. Okay. So yeah, I was after C-section. After a C-section, yeah, I was home um exactly um 18 hours later.

SPEAKER_02 17:57

Wow. Yeah.

SPEAKER_01 17:59

Yeah, that was actually quite difficult. At the time not, but afterwards and having to deal with everything that came after because of that, and uh just the lack of support and conversation around the things that actually should have we should have been speaking about. I then ended up being readmitted back to hospital on um day six, seven, eight.

SPEAKER_00 18:28

So day twelve. Oh wow. So you had a whole two weeks at home with baby. Yeah.

SPEAKER_01 18:35

Baby was also um, well, not fully discharged, but yeah, so we was and we was going and back and doing our checks. Um, you know, the five-day, um, three-day uh mid uh health professional comes round. Um they was checking the C-section. At no point in that time did anybody pick up that there was a problem. Um I went, they took the dressing off. I still wasn't actually told like no water contact um directly. Um, so there was just a lot that I didn't know. And um, because of that, my wound ended up being infected, but it had actually been infected for a long time and should have been picked up sooner than it was. And I, it was actually my partner that forced me to go to the hospital because I was just again, like I'm just such a go person. I was like, oh, it's fine, it's fun, it's just like, you know, it's just this just gotta be like C-section pain. And um he would for like three days leading up to this day, he was looking at me and he was like, Monique, like the pain that you're in is like excruciating. I can see it in your face. And I'm like, yeah, but it's just this has just got to be like, you know, not because otherwise someone would have said something, of course. And when we went, um it was like lights, cameras, action go. Like literally, they was like thought I had sepsis. Um, they actually told me I had sepsis, actually, and um that put us both into a real downward spiral because they they told me that they thought I had sepsis and then left me unattended for six hours, and it was my mother that came and was just like, what's has what's happened? And when we explained like basically nothing, she uh went out and did mama bear stuff and actually got them to do something.

SPEAKER_00 20:35

Can I ask you a um a bit of a practical question? Sure. But when you went back to the hospital, what section of the hospital did you go back to?

SPEAKER_01 20:44

Yeah, that's a good question. I went back to um we back in the maternity war? Yeah. Or yeah, I went to maternity. Yeah.

SPEAKER_00 20:55

Was baby re-admitted with you?

SPEAKER_01 20:57

Yes, she was. Yeah, because at first they wasn't going to readmit baby with me, but she's breastfed. And so um again, had we not been adamant, um, I don't think they would have re-admitted her with me. But my partner made it very clear that he wasn't going anywhere and that baby needed to be with mum for breast milk. Um, and after my mum came and kind of went and did what she did, they actually ended up moving me into a room where I and the baby and my partner could be. Um before that, I was literally just in a like like a nurse room, you know, like just a checkup room for for hours. But I mean, after being told you had sepsis, like that wasn't ideal at all because you know, your mind just starts to go. Prior to being a mum, I um was in the private sector for quite some time as a contractor. My last major contract was. Um in a childcare comp with a childcare company. So I had gone through the best part of like eight years worth of childcare, early years experience, early years training, SCN, behavioral, yeah, special educational needs, um behavioral training, fine motor skills, gross motor skills. So I just gained all of that experience prior to being a mum. And so when baby was as early as like two months, I noticed that she wasn't using one side of her body the same as she was using the other. And um we went to the doctors like immediately. So it wasn't that I went to doctors for it, I was still being readmitted. So I was readmitted day 12-ish. Um, and then I ended up being in hospital for six days. Yeah. Um and then after that, I ended up with an open wound for six months. So yeah, so I was having to be um constantly dressed. So it started with being dressed every single day, and then it went down to being dressed every other day, and then it went down to being dressed three times a week, then to twice a week, until I just got totally irritated and I was like, we're booking a flight out of here. And against everybody's advice, we went on holiday and my wound healed actually whilst we were abroad. Um I just yeah, it sun, and I also just think I needed to just get away from just like it was it was a really stressful time, like being a new mum. It was okay when they were coming to dress me at home, but then they made a decision for some unknown re unknown reason that they um weren't gonna do that anymore, and that I would have to keep going in, even though I had a newborn. Um, and that was like really awful as well, because um my baby was a winter baby, it was a really tough winter, and like, yeah, three times a week I was having to bearing in mind I had an open wound, get myself ready, get a newborn ready, and constantly go back and forth. But um I say that to say that as I was going back, and you know, I had some really lovely nurses. I I will say this when I was finally going to the doctor's surgery, so I was no longer going to the hospital to be redressed and no longer going to like the community nurse. Um, I was now going to my doctor's surgery, and um, I had a lovely team of um nurses, and you know, they were just like made it their duty to kind of get to know me and get to know baby, and like I think they could also see mentally that it was taking a toll, and so they'd always just try to keep me chatting. And again, because of my training and my experience, I just noticed little things with her um fine motor skills, um, and so I would mention it to them and um eventually it got passed to the doctor, and it was just kind of dismissed, like, no, nothing's fine, it's fine, it's fine. But again, just taking it back to always us always wanting to make sure that our daughter's health and her well-being when it came to her health was in our hands. We trusted ourselves so much. My partner trusted my experience, and we also just went through like a monitoring process where we just started to monitor it for ourselves to see if he could see what I could see. And we did, and so we just trusted that. And we went back approximately seven times before we was actually referred to community pediatrician. By this time, she was now coming up to like six months, um, but still, yet again, it was very like, okay, we're just doing this to appease you at this point because you keep coming back. Um, they couldn't see the issues that we could see. And then we went through a quite a traumatizing experience where the actual pediatrician in the hospital, they wanted to do a brain scan. Um, but obviously, on a baby so young, in order to do a brain scan, you have to sedate the baby. And we wasn't comfortable with that. We kind of was asking for other measures and we done a lot of research and it was like that there are other options. It's just that it's not always done at your local hospital, it might be like a specialist hospital. But of course, in order to get those referrals, it it one costs money, and two, it's time and effort, and so we kept on being brought back to our local hospital that didn't have the facilities to give her the scan without the sedation. Um, and we was point blank not gonna let her be sedated for it. So it's so it's so funny because that phone call that we got after seeing that pediatrician literally was your baby could have brain cancer.

SPEAKER_00 27:14

Yeah. And that was That's a very big word. Yeah, yeah. To two new parents. Nothing. Yeah. We can't see anything. Yeah. We're just doing that to keep you happy and yeah, go, go, go if you want to, yeah, like just but now we are 360.

SPEAKER_01 27:32

Yeah. We that the same um doctor that actually told us that after seeing um our child actually um on the first appointment couldn't see what we could see, and brought her back, and then on the second appointment, then was like, now that you know she's older, maybe, yeah, actually, okay. Right, to rule out this, this, and this, we need to do the scan. And then obviously at that point it was like, well, we don't want a sedated scan, so we need to look at another option. He his actual words were, Well, now that I've scared you both enough, you can now make a decision that is satisfying to you. And that conversation came after telling us that our baby could have a brain tumour, that she could have brain cancer, that there could be a blockage in her brain, that she could have something wrong with like um a tumour in her uh chest area, cavities. Yeah, it just went on and on. And this is extremely upsetting. Yeah, it was, I mean, yeah, it was it was very upsetting. It was um because the problem was is that none of those things had been described to us prior to us refusing the sedated scan. It was by the doctor's own words, my way of forcing you into getting this sedated scan. Um, and seeing as that hasn't worked, well, I'll just leave it to you then. And they tried many tactics actually, because they tried the um to separate us. So they would ask when my partner was at work, and then I would say, oh, like he's not available for a call now because he's working this day and this day, but maybe call on this day. And then instead of calling on the day that he'd be at home, they'd call on the day that he'd be at work. So they'd have the conversation with him when he was separate to me, and they would do the same with me and would um essentially just try to coerce us into going against the other person's choice. You know, they'd say things like, you know, you're the father, you know, and mum's, you know, maybe stressed out right now with everything that's going on. Maybe you should make a decision. And then to me, they'd say, Well, you know, you're the mum, and you don't you you're gonna have to live with this for the rest of your life, if anything. And it was just a lot of that. And we went through very, and it it went on for the best part of like I'd probably say about five to six weeks, like constant. Um, until they got the message that we wasn't gonna sedate our baby to have this scan. And um the the fact that we'd noticed there was something wrong with our baby, and that they hadn't noticed, meant that we were just gonna have to take charge from then. And so we did. Um, we refused the brain scan. Um, we what we actually refused was her being sedated. Um, and because they were not willing to um offer us a non-sedated scan, um, neither at that time nor when she got older, we just decided at that point to just take everything into our own hands. Of course, you bearing in mind we now have like brain tumour, brain cancer, have all these things like buzzing around our in our brains, but we we did a really good job at trying to just dismiss that and just go back to our birth experience and actually looking through our paperwork and actually figuring out um what the issue could be. And then we one day went through the notes from my birth and realized that there was actually a period in time where they were um being quite manipulative and forceful in terms of getting the C-section. And when we compared that time of the day with the record that we had of uh, we realized that she was actually losing oxygen at that time. So we kind of like, I mean, we are not doctors, so we was just kind of just using a lot of common sense, just putting pieces of puzzles together, and that led us to the belief that she'd probably lost oxygen at some point on that day, and that could have had an impact in her brain somewhere, that could be what's impacting her movement. We took that to the doctors, um, and at that point I just um enforced that I saw um a childhood doctor of mine that has known me since um since I was a child, young. Yeah, knows the family and everything, and just sat down with him and I said, Look, this is you know, like, this is what I think has happened. And I think for the very first time in that appointment, someone actually looked at me for me and looked at us for parents and um actually listened to what we were saying. And I do also think it helped the fact that we had a long-standing relationship with this doctor, specific doctor but doctor surgery. Um, and so there was familiarity, you know. I didn't really feel like for the first time I was begging or like pleading. I just was talking to a friend with medical experience and saying, like, this is what I think it is, this is what I know from uh early years development point of view, and um I need to know what's going on. And um he referred us then to the community pediatrician, and within weeks we were then referred to um physio and occupational health therapy, and as soon as we went into OT and OT did their initial occupational therapy, did their like initial assessment, they sat us down and was just like, right, yeah, so your daughter has a form of cerebral palsy, it is mild, it's a form of cerebral palsy, which is stage one, which is called hemoplegia. And we were like, well, first of all, I was like stuck at cerebral pausy because I'm looking at this baby that's rolling over, like yang yang yang in a way, like just so happy, full of life. And up until that point, my experience or knowledge of cerebral pausy was just a total inability to use parts of or something a lot more severe. Yeah, so much more severe than what you're seeing in your baby. Yeah, so that would that came at a great shock, but also bearing in mind it also came as a relief because of course for the last couple of months I had brain cancer buzzing around in my mind from that um doctor at the hospital. So yeah.

SPEAKER_00 34:37

Can I ask for questions here? Because you've mentioned stage one. What does that mean? Does that progress or is that just where she's at?

SPEAKER_01 34:46

Yeah, scale? It's more like a scale and it's just where she's at. Um the thing is is that uh because it was identified so early, it was almost never seen in such a mobile baby so early. So it was a lot of like dittering. I mean, even at that point, uh we were told that she wouldn't walk. Um, if she did, it would be really delayed. She may six months or at this point now in seven months, seven, eight months, yeah.

SPEAKER_00 35:23

So we're still on a very small baby. Yeah, yeah, yeah, yeah. Baby that's starting to be mobile. Mobile, yeah. So at that point they're telling you, right, we had not identified it.

SPEAKER_01 35:33

Yeah, we hadn't identified it.

SPEAKER_00 35:35

Now they're telling you that she may not move.

SPEAKER_01 35:38

Yeah, that she if she did it to be delayed. And what I would say that was a bit different to the approach of the doctor and the doctors prior to the specialists, and that's OT and physio, is um what we now know is it was more a preparation. Um, however, at the time, obviously we're just taking it as our baby's not going to be able to do these things, right? Yeah, she wouldn't crawl. If she did crawl, she wouldn't. Yeah, no, that she would have, she might not crawl. Like, basically prepare yourself that she might not crawl. She might not just do all of the milestone things. Yeah, that was again another like, oh, because I've basically spent the last four months trying to battle with them to tell them that I was seeing something that I knew I was seeing, that they was telling us that we weren't seeing. And then it went to like a drastic case of it could be this. And because we didn't want to go down the route that they were suggesting, um, they just kind of left us until I went and had that appointment with the doctor, and he was like, right, I'm gonna do this for you. Um, and that also was a lesson to learn as well, because if you don't advocate for your child, they're not gonna advocate for your child for you. Um, and that was like the biggest point for us as parents, where we realize that no one's advocating for her. Um, if we are not pushing, if we are not forceful, if we are not saying this is what we want for our child, then they are either gonna give us what is the cheapest option or what they know to be their best option. And the minute you say no to that, it's just okay, oh well, all right, we'll get on with it kind of a thing. Um so I would say that we were definitely um supported and guided to just have having that relationship with that specific surgery that we were able to move forward. If we had moved prior to or was in a new area or um didn't have that existing relationship, I don't know honestly what we would have been looking at in terms of support or help because I really believe it was that one-to-one personal conversation that was had that just had him like, yeah, like our support. I can see that this is something that you are sure of. Um, and also he was very honest. That doctor was the first doctor that was very honest and said, like, I'm not a pediatrician, like I'm not I don't specialise in children. Um, and so if you're saying with your knowledge that this is what you're seeing, even though I'm not seeing it, that doesn't mean it doesn't exist. So I'm actually just gonna send you to people that specialise with children and just so grateful that he did do that. Um so fast forward now, we are eight months um being prepped that our baby's not gonna hit certain milestones. So, as well as now dealing with this condition that our baby's been diagnosed with, we are also, and I think this was the most challenging part of this journey, is um we are still first-time parents and we are still figuring out when do we wean our baby, when do we start weaning her, are we giving her mango too early? Um, and you know, just the normal, you know, putting fruit in the little squishies, like freezing my breast milk in little ice ice pops so that she's, you know, you know, textures, just all the normal um weaning. Um and then because we are um a plant-based family as well, um, some of the weaning options in the stores are just not suitable for us and suitable for our household. Before having our child, we knew that we was going to do a lot of homemade stuff. We already had prepped for that and planned for that. And so we'd we knew that we wanted to make our own food and make our own snacks and make our own weaning. It just was a lot more difficult because we now had this element of research for her well-being, health, and her condition. So we had to try and bring the two together. Once we realized that her condition was essentially brain damaged, we started to focus on herbs, powders, um, fruits, vegetables that were going to encourage uh brain development. Uh so we've we focused um in the early stages of weaning a lot on like lion's mane. And we would use lion's mane powder and start to um incorporate that into like um ice pops so that she was getting an intake of that. Um and we just was using as many um herbs and fruits that were specific to one um blood production and blood flow, and two co currecting and connecting and reconnecting neurons in the brain.

SPEAKER_00 41:17

So does that mean that you could recreate connections that essentially never happened because of the lack of oxygen uh around her birth time? Is that what you were trying to do? Yeah, that's yeah.

SPEAKER_01 41:33

Yeah, that's exactly it. So we were told that um her condition is irreversible and that the damage is basically already done, and because it was done so early, it's not reversible, and that and that was the preparation for she might not walk, she might not crawl, she may not talk until this age. And that's because in their mind, um the damage is done, and we need to teach you how to just live with this. In our minds, it was okay, brain damage, um, loss of oxygen, lack of neurons, how can we reconnect, re-fire, and and and at the very least, how can we support that? Um so we just went um headfirst into that. So um, yeah, we just started to introduce um small things. It's actually what sparked the start of our business because uh we we identified that minerals, uh a huge intake in vitamins and minerals, um as natural as possible, were gonna support um all of those functions. Um as well as just supporting her functions anyway, as a young child, we needed to kind of like boost it up a little bit. So um we know about sea moss. Um, some people call it Irish moss. In some places it's just called sea moss, in some places it's known as a form of seaweed, but essentially it is substance that um is comprised of um 92 minerals and vitamins of the 102 minerals and vitamins that the body actually needs. Okay. So everybody's bodies, yeah, very rich. Yeah. So everybody's bodies need the 102, and um CMOS has 92 of 102, and CMOS has 92. So immediately we were just like, yeah, this is a no-brainer. Um I'd always been introduced to CMOS very early in my life. Um I remembered like my dad coming back from the Caribbean with it, and like it was always just something that I'd always seen in our culture as a juice or a drink or a porridge. Um so I was very familiar with it. Um, and towards the early Stages of my journey going into a plant-based diet, coming out of veganism and going into a plant-based diet, I wanted to focus on the natural elements of boosting my minerals and vitamins. So I'd actually started taking and making it before. But the challenge now was how do we make it and produce it suitable for a child? And that's just because of its texture and its taste. And then we just thought, but this is great for all children, like, and everybody should have it, really, because it's it's so rich in minerals and vitamins. And that was the spark of the business. So we I just started to um she absolutely loves mangoes. I had a mango craving all of my pregnancy. And then I birthed a baby who just like can honestly sit and eat mango after mango after mango. So that was the first thing I noticed. Hmm, what if I actually just like blended the sea moss with mango? Maybe she'd be able to take it like that. And we was giving it to her just raw, um, which was fine. And she would take it because that was another thing we've realized is if we introduce these things early, then it just becomes the norm to her. Um, so we did do that. She was taking it fine, but then we realized that we were getting such good response from like peers, friends, and family, like, oh my gosh, your baby takes CMOS. Like, I can't even stand the taste of CMOS. And these were like adults saying this. And we were just like, well, we're seeing the positive impact of her having the CMOS. Yeah, so I'll go back. Now we've got to, this is what your baby has, this is a diagnosis. We got put on a program where we had to keep being seen for um a six-week program with physio and a 12-week program with occupational health. And um that would go week by week by week, we'd keep going back, then it dropped to every two weeks, we'd keep going back. Um, but at the very beginning, they let us know that because of the diagnosis, that she was gonna be in their care until she's 16, regardless. Um, and that was just their way of supporting, and then, you know, all the other things would come, scans and so on and so forth, and just a monitoring, essentially. Um but then what we noticed as we started to increase her um intake of some herbs and um seamouse and uh different powders and minerals was that we were seeing the use of her hand um improve. And the very thing that they said that she might not do, she started to do, which was crawling. When she started to crawling, it was, oh well, you know, she may only crawl and bear on one side, and then that crawling and bearing on one side turned to actually just full throttle crawling, and so there was then the encouragement to get her to brace on um the weaker side, um, which of course we would do, and we would start to do um therapy in this process before I go back as well. We, and and this is in terms of like the research, we I was focused, like I said, again on the um food health side. Um and after my partner had finished with the this is what this is, he went on to more of the physical side of the therapy. So we started to combine the two. So now we were doing like active water therapy by way of swimming, having her in water, um, having her relax. We started her swimming quite early. The swimming actually started before we got the diagnosis because we'd seen it so early. So we were already doing the research to say, like, let's get her mobile. Um, we didn't need the doctors, the hospital, the specialist to tell us that she had this thing. We knew what we were seeing and we wanted to mobilize her more. So we started her swimming as soon as 12 weeks hit, she was in the water. But what that did do is that encouraged obviously the movement of both sides of the body, um, sort of exercises that her swimming teacher would have her do, which is like stretching forward and reaching for balls and little toys that they would put in the water. You know, at first it was just the one hand that was going to get it, and we would have to be encouraging the second hand, and then week after week we'd be going, and then there'd be that, you know, just sort of like muscle memory that we was encouraging. And then we'd go back for our appointments with OT and physio, and we would just watch them in shock, watching our daughter, like, how is she doing this? Like, how like we just we don't get it, like what's going on here? And so at the early stages, we didn't share too much. I think we just didn't ha feel confident that we could. We didn't really have the trust as well. At this point, it's just um our theory as well. It's not like a specialist hasn't said to focus on this, it's just us saying, well, this would make sense. Like if she's got a loss of neurons in her brain, then we need to fire the neurons in her brain, we need to try and reconnect them. And that was just common sense to us, but that had never been said to us or encouraged to us. And it's so funny because at no point did any of these specialists ever link these conditions with the food. And we was we found that quite odd because in research we know that dairy doesn't always have the best impact on children's development. There are certain processed sugars that don't have the best development on children, um the best impact on children's development. Um, and we was kind of like a bit shocked that no one or none of them said, oh, try and stay away from this because it won't encourage this or you know, try to focus on this diet because it may support, you know, healing. Instead, it was just sort of more like, um, you're gonna be here till she's 16 and we're just gonna help you figure out how to get her through this condition. Um, so for that reason, we didn't share much of what we were doing at the beginning stages, fast forward to now like her being one year old or just after her first birthday, and then we hit that new milestone with physio and OT OT, where there's a change in how often uh the child is seen. Um, and again, we would just go back after appointments, and like both dad and I would sit there just like kind of kneeing each other, like watching them just honestly, we we could just see it in there that they're just like absolute in amazement of her progress. I remember one appointment when she was about 14 months old, her physio just like sat there. Now she's walking, by the way. So um she started taking her first steps on um holiday in Jamaica. Um I would also say that that that change in environment, we took a long break, that also helped a lot. We saw, just from a sensory point of view, we saw huge um improvements of her just grabbing and wanting to grab and touch things. And I'm I've always been a traveller, so I think at that point, that's when I had said to my partner, we've got to travel more to just keep her interest in textures that we don't have access to here. Um, sand, for example, like that bit between the sand and the ocean touching, like that's a sensory experience that if you don't live near natural water or open water or seas that you just don't have access to. Fourteen months uh we came back and um we her physio was just like wow, I don't even know what to say. Like this this speed in progress is just I've never seen it. And I've been here for um, I think she was one of them that had been there for 19 years and had never seen the level of development in an infant with that condition in such a small space of time. So, of course, we were doing everything, so we couldn't actually pinpoint it down to one single thing. We couldn't pinpoint it down to gymnastics, we couldn't pinpoint it down to swimming, we couldn't pinpoint it down to the CMOS or the diet, but we knew that a combination of those things was helping to fire the right neurons and connect the right paths. Um, and then at that point, my partner got into um sort of I did do baby massaging very early on when she was younger, and he made a decision to just pick it back up and just from a point of view of I think we had an OT appointment around that sort of 14-15 month mark, where um even though they were astonished with her progress, it was now we were moving on to sort of blood flow. Uh not so much the neurons and the firing in the brain in terms of the brain damage because she was now well, she'd crawled, gone from crawling to walking, um, is now talking. So they that concern was no longer there. It was more about actually the blood flow going to the area. And so um he picked it up on himself to just start doing like massage therapy with her. Um we did a lot of like bath, uh still water therapy, but within in the bath, um, exposure to extreme temperatures was actually one that was advised to us by OT. So, you know, like if you touch hot water, you you jump, and if you touch really cold water, you kind of have a reaction. Um obviously, with her condition, you might not have that sensitivity in that side of the affected side of the body. So it was now a case of trying to um reconnect the the sensitivity now. So, you know, we've gone from the neurons in the brain to now focusing on like the sensitivity more, and that's kind of where the sensory element came from and the mobilization with the hands, fine motor skip skills and the grip. And um, yeah, that was again, that was, I was just saying the birth of us with our our company wanting to bring CMOS to all children. Um, condition or not, we just wanted everybody, all children, to be able to access really early on um the benefits of such a rich um vitamin and mineral substance. Yeah, essentially we just got to a point where we stopped taking advice um or um comments that were sometimes quite effective towards us um on board, and we just started to take everything to do with our child into our own hands. Yeah, it it just developed from there and so it's been a bit of a journey, to be totally honest, and it's one that I've not actually spoken about before because um you don't often get the spaces to speak honestly and openly about um your journey into motherhood, especially if you're faced with um challenges of disability with your child and so on and so forth. Like there claims to be a lot of spaces, but there aren't actually a lot of spaces. And even though you've got family and friends that are um close to you and love on you, and love on your child and love on your family, um unfortunately when people don't know, they're unable to give you the space to speak freely. And so we just bottled a lot up and just continue to press um together um and just did it unapologetically, like we didn't um we got to a point where we just was like, okay, whatever, like whatever. Um, but that did bring me to some of the things that I did want to actually discuss, which was just around um the concept of um the vaccinated and the non-vaccinated, because um we had faced so many comments and um unpleasant conversations um around our choices. And sometimes I don't think mothers, ourselves and families um and and those that support, you know, aunties, uncles, and brothers, sisters, uh uh cousins, they don't really understand that some things are the choice. And just because the majority choose to do something, it doesn't mean that you have to choose to do it and you actually can choose to do something different. And I think at the beginning, a lot of the choices that we made for our child were so unconventional and so against the grain that everybody just didn't want to support us or kind of just was like, Oh, are you sure? Like it was, oh, oh, are you sure? Like, what about what about because they was just so used to putting the health of their children into the hands of somebody else. But we were very sure that we didn't want to do that and that we wanted to take the health of our child into our own hands before even knowing that she had this condition. That was something that we'd spoken about during pregnancy. And then, of course, then we had um this uh condition um on our plates, it just fueled us even more to do so. And I think sometimes we lose the sensitivity around choice, and in in the conversation, there's a lack of sensitivity, and we forget that parents can actually choose to do what they want to do with their children, and as long as they are comfortable in their choices for their child, they should be supported in that choice regardless. Um, and I think that goes both ways. Um, I've had so many conversations where um we get to the end of the conversation and a mum will say to me, Um, Oh, so how did you find it? And then I'd be like, Oh no, we chose not to vaccinate. And they'd be like, Oh, I would have had no idea from this conversation. And I was, I'd be like, Yeah, because we're having a conversation about your choice, and I'm supporting your conversation and your choice and your reality and your experience. Um, I don't need to enforce what my choice was onto you. And that actual part of those conversations have been such a pivotal turn for a lot of mothers and fathers that I've had that conversation with, because I think prior to that, most people are used to um if you choose to vaccinate, be so for it that you can't see anybody else's choice. And if you choose not to, I'm so against it that I don't want to talk about it if you choose to. When actually, if we just created a space where we can just talk freely and just be supportive, it doesn't actually matter because my choice is my choice and your choice is yours. Um so yeah, it's been it's been a journey. It it honestly has been a journey. Um of course, we then so she's still going through uh physio and OT. Um every time we go, she's still being like wow, she's still wowing um them. Her um personality is incredible. Um she is a mini grandmother, literally. She's just such a tiny big person. Um and she's she's two I gave up on the months some time ago. But she's like, yeah, like Are we calling that two and a half? She's not quite two and a half yet. She just turned two. So two and like probably about if I do the quick months, maybe four months, which is near enough two and a half. Yeah. So she's coming on. She's um, yeah, she's doing so well. I mean, um, her swimming teacher didn't even she's independently swimming underwater. Um her swimming teacher didn't actually know she had a condition until we brought it to her attention. And we brought it to her attention because we was concerned that so basically her swimming teacher basically moved her up three levels because she was achieving. And we then kind of became a bit nervous, like, oh my god, is she gonna be able to hold onto the pool because of her condition and these sorts of things? So we brought it to her swimming teacher's attention, and her teacher, swimming teacher was like, What are you talking about? No way. And we was like, Yeah. And she was like, Okay, I'm just gonna act like you never told me because I don't see it in the water, and she's doing really well. And since that conversation, she got progressed up another two levels within one term. Um so again, like just that choice to just choose for ourselves what we wanted to do with her, um, I think has helped so much. Um, she's in gymnastics, she's um holding on to bars, so she's bearing her whole body weight on her hands and arms, which are things that we were just told that she wouldn't be able to do. Um, I guess that the encouragement there is just to keep your children active as much as possible, um, in general, but especially if you're faced with um any sort of um disability and being told that your child won't be able to do or won't be able to achieve, like really take that into your own hands and let your child decide what their limits are and what they can and can't do. Um and it it creates such a beautiful experience for you as the parent, um for you as the mother, as the partner, as the sister, the daughter, the cousin, the auntie, because then you're able to have so much more free conversations and actually be support to others when they really need it, because you've gone through this just journey of just letting go of all essence of negativity. Like being told that your five-month-old might have brain cancer, to then be told that you might have they might have a tumour, to then be told that they would never walk, they never crawl, that if they did do it, it wouldn't be till they're near enough two or three, and um, just actually just letting go of all of that essence of negativity and just saying, my child will, my child can, and whatever my child cannot do and will not do it is because she doesn't want to, or um, that's the limitations, and then we'll negate that when we get there. It's helped definitely me be um supportive from a community point of view as well. I feel as though um prior to motherhood, despite being around children in a professional environment, but also being around children in a personal environment for so long, I would say that without even realizing it, and maybe without even wanting to, I had a lot of just preconceived thoughts and I think I just have to call it for what it is like judgment. Yeah, and it's not judgment from a bad place, it's just just judgment from your current experience and circumstances, and going through this journey um has really helped me to let go of all essence and elements of judgment, and also to empower mothers and fathers and families that your choice is your choice, and everybody should respect you for whatever choice you choose to make. Um, and then also just to encourage parents to take the health of their children into their hands a little bit. Um, you know, we make everything, we've healed her from all the common um flus and stuff that children get. Um, because she also goes to nursery as well, so she's interactive. With other children. So, and and we're always outside, so you know, runny nose and all these things. But, you know, just to encourage um even like the use of elderberries, like there's a lot of elderberry trees in this area, and um in just in general, it kind of just gets brushed aside. But it had it's such a powerful um berry, and it it's really um fantastic for the body for children, but also for adults, but specifically for children, just to help for healing, common colds. Um, yeah, the just the power encouraging like the power and the use of ginger and roots a lot, um, weeds a lot, um, yeah, just to support parents on that journey if they are choosing to, and also time as well, and how to balance that because unfortunately, we are now in a society where um mothers work just as much as fathers, fathers work just as much as mothers, sometimes mothers are working more, and so on and so forth. Sometimes you're working from home, sometimes like there's so much has changed over the last sort of let's say 30 years in terms of um raising children in a in a household in a community that we just focus on encouraging a balance and just to say, like, I promise you, once you've made that elderberry syrup once, you'll make it with your eyes closed the next time. Or like, once you've made it once, it probably will last like for six months to a year because you probably won't need it as often. Um, and it probably eventually saves you more time because you don't actually have to keep going to the doctors. Um, you can actually just give them a teaspoon of your uh syrup or whatever it might be. So, yeah, it's just to kind of encourage that letting go of the judgment and taking back your choice, whatever that choice might be, and also just encouraging us as parents and mothers to support everybody's choices and um to create a circle of openness where people can actually just speak freely without judgment, like truly without judgment. It's it's I used to say it before, but I mean like truly, like no judgment on what what anybody feeds their child, how they do it, um, and also just be willing to just answer the questions based on your own experience rather than um, oh well, this person said this or that person said that. Um I find a lot people don't actually do their own research. So a lot of what we're regurgitating isn't actual, isn't actually our own knowledge and information, it's actually just regurgitated information maybe from social media or from a neighbor or from somebody else. But how often do you actually go to the internet yourself or pick up the books yourself and actually read and and really dive into conditions? Um so I guess also to just encourage that space too. Um but yeah, that is that is how has been our journey so far. Motherhood is just such a beautiful thing. And um it really does take a village to raise a child. Um if we do it well and together, we are raising the next generation of wonderful, beautiful, loving, caring, respectful children to themselves and to others as well.

SPEAKER_00 1:09:54

I could not agree more. Thank you for having me. Thank you so much, Monique, for sharing your experience and um your learnings as well. Thank you. Thanks so much. Take to you soon. Bye-bye. Bye-bye. Monique, thank you. Thank you for trusting this space and for trusting me with your story. I know it was not easy to tell. For showing up with such conviction, such clarity and such generosity. Because sharing something this personal, knowing that not everyone will see it the same way, it takes real courage. What has stayed with me most from this conversation is not any one decision or any one moment. It is the spirit behind it all. A mother who refused to be dismissed, who trusted herself when the system didn't, who thought quietly and persistently for her child, and who came out the other side knowing herself more deeply than before. And then there is that line my choice is my choice, and your choice is yours. I keep coming back to it. Because in a world that is so quick to have an opinion on how other people parent, how quietly radical is it to simply say, Hey, I'm not here to judge you, but also I'm not here to be judged. If this episode challenged you, good. If it made you uncomfortable at moments, good. That is what growth feels like. And if it made you feel seen, if you recognized yourself in Monique's determination, her questioning, her refusal to simply accept, then please share it. Because there is a parent out there who needs to hear this today. Monique, your child is lucky to have you as a mother who fights for them the way you do. As always, thank you for listening, for being part of the village, and I'll see you in the next episode. Raising with the village will now be released every other Thursday, giving me the space to keep bringing you thoughtful and honest conversations. You can find all past episodes on Spotify, Apple Podcasts, Amazon Music, YouTube, or wherever you usually listen. And you can follow the show there so new episodes link straight into your feed. If you'd like to get in touch, share feedback or suggest a story, you can find me on Instagram at Raising with the Village. I always love hearing from you. And if this podcast has resonated with you, one of the best ways to support it is by subscribing, rating, leaving a review, or sharing an episode with someone who might need it. It truly makes a difference and helps these stories reach the people who need them most. Thank you for being part of the village, and I'll see you next time. Bye bye.