Ep. 17 - Raising a Child the World Doesn't Understand

What do you do when a child looks at your son and calls him a monster?

This is the episode I didn't know if I could record.

In this one, I sit with the moments I usually don't talk about — the Royal Children's Hospital, the strangers in the supermarket, the systems that keep failing families like ours, and the grief that doesn't get a name because it doesn't have an ending.

This isn't a story about overcoming. It's about staying.

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In this episode:

— The day at the Royal Children's that I'll never forget 

— Children's innocence — when it protects them, and when it doesn't 

— The looks, the comments, and the version of yourself you have to become in public 

— Teaching your child to know who they are before the world tells them 

— The reality of surgeries, complications, and medical uncertainty 

— Strokes, comas, and the moments behind hospital walls nobody talks about 

— Why the NDIS is failing the families it was built to support 

— Marriage under pressure — and what partnership really looks like when you're both running on empty 

— Advice for parents in waiting rooms, newly diagnosed, or just starting this road 

— A message to Soul

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If you're a parent walking a similar path — I'd love to hear from you. Reply on Substack or send me a DM on Instagram.

The Walk is a fortnightly podcast about fatherhood, marriage, and raising a child the world doesn't always understand. 

New episodes every other Monday.

Transcript

SPEAKER_00 0:06

Hello everyone, welcome back to The Walk. I'm Jake Donnelly and this week we'll be discussing what it's like to raise a child that the world doesn't understand. As always, this is a space for raw, honest, and non-judgmental conversation. Thank you for walking alongside me. And if you're a first-time listener, then thank you for jumping on this walk and this journey. I hope there's something in here that resonates with you. So let's jump straight into it. Like I did last time, I'm going to start with a bit of a story just to give a bit of a background on what it's like raising a child that the world doesn't understand. We were actually at the well, I wasn't there, my wife had actually taken my son's soul to the Royal Children's for a appointment. And at that appointment, you, if anyone's ever been there before, you go into these big waiting rooms and it's it's massive, and they've got mere cats, enclosures and all that stuff there. So if anyone has been there, they'll know exactly where I'm talking about. Um and there was a child who was quite uh loud and out uh what would you call it? Like loud and boisterous in that waiting room, which is like again, it's fantastic to see kids like that. But this child was quite confrontational to so to Seoul, and he was very interested in how Sol looked and was very, very curious. And then my wife was telling me this afterwards. Uh the child sort of came up to Seoul and had a look a few times, said some sort of whispers to his to his older brother, and his older brother sort of just pulled him away and said, you know, just leave the little boy alone. He he's just you know trying to enjoy his time here with his family. And the little boy then moved the conversation towards quite loudly how Sol looked, and actually called Sol a monster. He said, You look like a monster. And to be honest, thank God I wasn't there. Um, I don't handle those situations very well. Uh it's something that when she told me I was full of rage and and and angry, but Sol's response to the child was uh I am a monster. I'm Grover from Sesame Street. And I think the beauty in that is probably the innocence that we are dealing with at the moment. Soul's quite oblivious to how he looks, he's oblivious to what the world perceives of him and think of him, and I think it's probably the easiest time for us right now as parents, having to deal with obviously the facial differences and what comes with it. I've spoken about it previously in in episodes prior where people take soul on face value and you just want them to know your your kids how you know them and know that they're just normal children, what we would call normal. Um, but yeah, that we we deal with this a lot more uh than people realise, but very grateful that soul's oblivious to it. But yeah, when I did hear it, I was I was full of rage. But I then realized when I came back to it, like children are just unfiltered, and they say things and see things exactly how they are, and that child's perception, like I can't hold that against uh against a child. I I don't even know what age he was, but when he said that, his older brother immediately grabbed him and took him back over to the parents. And and I think in that moment I'm kind of thinking to myself, like, where are the parents? Uh like I've had soul before say a few things, um, mainly about sort of family members or people out in public. Um, for some reason he's learnt this word chubby, which for me sort of triggers me a bit being body conscious and and younger, and I don't I got picked on because of my weight, not because of how I looked, uh I suppose aesthetically in the face or anything else, or um, but when I hear him say that I sort of pull him up on it, and it's not a scolding session, it's more just we don't judge people on how they look, we judge them from what they are internally. And it's yeah, it's such a tricky space to navigate, especially if you are a parent like uh with a child with needs, or a child who does look different or act different. Um, you know, I have in the past when I was younger and I would have probably said some things, not older, actually, when I was younger, I probably said some things to some people um but they uh uh that I that I regret and you know um uh and I think that we all have done that in our in our lives, but having soul really put into perspective for me. But I've always been one to when I see, you know, whether it's a child in a wheelchair or someone who's in a vegetative state getting pushed around by their parents, I I just feel so sorry for the parents and also the child because that's that's all they know um and they must cop it a lot. And now being in those shoes, I understand how hard it is, and and that's why this episode's theme around raising a child that the world uh doesn't understand is it's sort of there's beauty in the darkness as well. Like Saul doesn't see himself the way the world sees him, but I carry a constant weight, and I think my wife handles it a lot better than I do, but I carry a constant weight that one day my boy is going to see himself the way the world does see himself. Um, and that is the scariest moment thus far of my parenting journey. This preparing myself and my wife also preparing herself to have that conversation with soul. And I think it's more around educating. Um, you know, that old saying of sticks and stones will break your bones, names will never hurt you, but I think it's never been more truer than when you're in this situation. It's it's really about teaching your child who they are and to be proud of who they are. Um, no matter how they look, how they act, what they've got going on, I think every child should be proud of who they are, because it's such a beautiful thing being a child, and there's so much um innocence and and beauty behind it, and unfiltered rawness, which uh I'd love to have soul on here one day, actually. I just don't know if the conversation would flow uh as I would hope it would, but I think it'd be a beautiful thing, just so that you guys can actually see him how I see him, um, because he's such a beautiful boy. What people see versus who he is is a massive thing, uh, and it's something that you battle with as a parent. Um the in public it sort of varies a lot. There's a lot of uh stares, glares, uh comments, um, laughing. Uh I've had that a lot of times where not older people, but like older kids, even like in my opinion, if you're over the age of say 15, 16, you should know by then what's right and what's wrong. And there's been a few times where I've held um people accountable that I shouldn't have, probably. Um, but that's just who I am. And children will point, and I think because they're unsure of what they're looking at. And that's the same with with parents and people and humans. Like, we've had some family things where the family have actually been present during times where Soul has been judged on how he looks, and it's crazy to see how the family deal with it. They take it such uh with so much pain and so much anger, and I totally agree with them, and I've been there, I'm there every day, but um what they don't realise is they get that small glimpse into our world, and then we deal with that every single day. So they go back to their normal day-to-day life, and we have to deal with it day in, day out. Um, we have had moments where parents have brought kids over. I had one moment uh which sort of blew me away a little bit, actually, which was we were at a well, where we're living, we're down at Wamphaggy, and there was uh a father with two boys and soul, and it was busy. Like you've got to understand, we try to avoid, or I do personally try to avoid the shops and everything when they are extremely busy because it's so much more stressful. There's so many more stares, glares, questioning. Um, you know, you're always on guard. I kind of feel like I'm his bodyguard the whole time I'm there. Um, and that's something that again is working on, it's part of the healing, it's part of the journey. But there was a time where we were at uh Woolies, and uh these two young boys saw Soul, and they literally stood right behind him and were looking at him and pointing and laughing to each other. Now I think they were brothers, young brothers. They would have only been seven or eight. And the father saw it happen, and he grabbed them and took them immediately out of the aisle. And I was obviously, you become numb to it, and I was quite deflated, um, but I don't show that to soul, but I was quite deflated. But anyway, as we were still in that aisle, the father, unbeknown to me, did a big U-turn up the other aisle, came around, and he goes, Is that your son over there? And I said, Yeah, it is, mate. I said, Was it the one that your kids were laughing at? That is my son. So all of a sudden I'm already confrontational, and it's not that gentleman's fault. It was just I'm a protector, I'm a dad, I'm on that front foot. And he goes, I just want to let you know I am extremely sorry about that. And my boys have I've told them off around the corner, I want them to come and apologize to whom. Is that okay? And I said, Well, I only want them to apologize if they feel the need to apologize. Um and he goes, Well, I've got a daughter at home who's got severe, I think it was autism or something. And he goes, For my two boys to do that to your son breaks my heart. And he was almost in tears, this dad. And at the time I was just full of rage, and I was thinking to myself, well, fucking yeah, they better say sorry. But reflecting on it soon after, um, I probably should have just shook his hand and gave him a hug because he's someone who's in the trenches as well. And and again, his children are uh see it every single day, and and they still didn't know how to react when they saw Sol. But, you know, they're they're the sort of stories you that people don't see. Um and they're the things that obviously as we progress as parents and Sol progresses through his adolescence, we need to uh I personally need to be better with it. And when those moments do come where there is an apology or something, it they're few and far between. So it it needs to I need to r take on board what that parent's saying and um yeah, and be more be more sympathetic and empathetic um with that parent because yeah, he's going through the same thing. And if my if sold it back to to his daughter because she's in a wheelchair or she's yelling or she's screaming or whatever it is, whatever type of condition she had or how she looked, I'd be fuming. Um so they're the things that we have to work through. It's a really difficult space to navigate, and some people do want to ask, some are too scared to start the conversation. Um, and that's completely fine. I just think people don't know how to react when they see something that they're not used to. Um, and that's completely warranted. Like with prior to having soul, I was one of those people, and I think my wife was one of those people, and our family were all those people who didn't know what to do or say. But who he actually is, like I said, is completely different to what people see. Like he's so beautiful. He's intuitive and he's so intellectually advanced for his age. Uh he can hold conversations with adults better than most adults can hold between one another. And I think he's probably a young boy who's confused uh as to why he can't do normal things that other people do. Uh I know that like when we were having Atlas, he said, uh, when Atlas comes, this was prior to Atlas's birth, he would say things like, Oh, I I gotta do my drops in my eyes so I can teach Atlas how to do his. And there's a little moments that break you as a parent because you think that's all he knows. He doesn't realise not everyone else needs uh eye drops. He's he has started asking why he needs to do his drops more often. He's been asking that question a lot more, um, why he can't go into certain places when it's bright. I touched on a story about the Christmas lights um situation, like you know, that feeling of he's never going to be able to see them just breaks your heart. And and he's I think he's starting to notice that Atlas can do a lot of things that he can't, and navigating that space is extremely, extremely tricky. But he's just got such a gorgeous nature. Um, and I really want people to see that, and I want people to understand that. And that's that constant advocating for your child. You want the world to see your child how you see them, and I think unfortunately, they're not going to. But hopefully, conversations like this will allow people to become more aware and actually try and see who is the person behind that face, who's the person behind that condition. Like they've still got a heart, they've still got a soul, they've still got a purpose. Um, it just may be that their journeys are a lot different. Dealing with complex medical needs is extremely hard. Um, from a parenting point of view, there's really no m like road map out of it. And we're dealing with a condition that the doctors have never really had to deal with before. Um, I have had one lady from the US whose son's got the same condition uh reach out probably late last year, and she actually sent us the details of the gentleman who found a mutated gene that Sol has for his condition, which is SENS, scalp, ear and nipple syndrome. Um but I think I've just been too worried, or my wife, you know, maybe we're a bit too worried to actually get into the nitty-gritty of it and see um what it actually entails this condition and what it's going to look like for our son moving forward. Like we have been told that um, you know, there's a 50% chance if he has children that he'll pass it on. If we have another child, this was prior to Atlas, that there's a 0.00001% chance it would happen to us again. But they said we would have t told you that, excuse me, before you had soul. So it's one of those things that uh you you never prepare yourself for. And I think if you do worry with that at the back of your mind, you're not going to enjoy the pregnancy journey. Like I was, my wife prepared for every scenario, whereas, and I've spoken before, I just thought I was going to have a textbook birth, textbook child. Um, but it's thrown a lot of things into perspective for me, and I'm I'm trying to, or I'm starting to see that I'm rather, and I don't want this to get taken wrong, but I'm quite grateful of what has happened because it's allowed me to grow up extremely fast. It's allowed me to almost have a midlife crisis at 30 or 29 when we had him. Um and really know what I want out of life. Uh, because I feel like if we had a had just, you know, like if we had had say Atlas first or soul was the same as Atlas and didn't have any health issues, I'd probably be still living where, you know, in the areas that I grew up in doing the same shit with the same people, hanging out. And don't get me wrong, I do grieve a little bit of that because I do I do l wish I had that connection with a lot more people, um, and and with my my son especially growing up with other kids and people who I grew up with as kids, but um I am also extremely grateful that it's sort of put my life into perspective, but I do not wish it upon anyone. So it's such a tricky thing um to I suppose deal with um and to come to terms with, but it's something that is extremely hard because there is no roadmap out of it. Um, you know, we had no idea what he had prior to his birth, it was just the moment he came out, it was you're left in the dark, no answers, we didn't get a diagnosis to 18 months to two years. Excuse me, uh, after he was born. Um, and at the moment it just feels like there's no light at the end of the tunnel. Um and you're what people don't see is your life plans are constantly put on hold. Um, like we're trying to move at the moment, we're considering moving interstate, but then it's you know, he's got a surgery coming up in a couple months, which is daunting. Um, we haven't even told him yet because we don't know how to tell him with his with his really bad anxiety I've spoken about previously. Um but your life plans get put on hold. And and I do envy at times, and I've got to catch myself and pull myself back to reality, but I do envy at times the people um who are around me who do have children, um, who have the ability to just like if they wanted to pack up their lives and move like to Queensland tomorrow. And I wish we could do that, but we just can't. Like, I've even got my brother-in-law, um, and hopefully my soon-to-be sister-in-law, his partner up there, um, who we would want to go and see, but like it's one of the brightest places in uh Australia, so it's extremely difficult to try and get up there and and and make the most of it because we're we're trapped indoors here. I don't want to go all the way up to Queensland just to be trapped indoors there. You do start to grieve, and I've I have touched on this, but you do grieve um a lot about the life that you once imagined. So I I grieve it every day. I'll be completely honest. There's moments, it's it's not like I'm down in the dumps every day, but I do grieve in moments like I'll see things or um at the moment I'll come home and he's sitting there just looking through the window out at the world, and and it and it kills me because I just wanted to be out there, you know, he's so curious about the world. And when I was when we were having kids and we were thinking about having children, I I I started to think about you know, going on trips to Bali, going on trips to, you know, Europe and being outdoors with my kids and kicking the footy or you know, doing whatever, having a picnic in the sun, and we just can't do those things at the moment. And I don't even consider it anymore because it's so hard and it's all it almost makes me makes me upset when I have to think about it because that's all you want to do. You want to enjoy life and and enjoy the world with your kids. Um so when I do speak to people and they say, Oh, you know, I took the kids overseas, and it was an absolute nightmare, and we're parenting in an even more difficult environment. I just think to myself, consider yourself extremely lucky because you can do that. And we can't, and I think there's a lot of parents who are in the same boat as us who don't get the same opportunities. And I'm sure if you're listening, um this resonates with you a hell of a lot because it it is extremely difficult. Um, like I said, planning our next home, we're constantly looking at houses with tree coverage, a big shed, so I can set it up so that um, you know, the soul can play at least outside. I can set up a playground inside, I can build him a cubby house, whatever it may be. Obviously, once the back's better. Um, but it it kind of feels like our future's been held hostage by his condition. Uh, and that's something that I've uh I'd have to deal with day in, day out. And something that is, yeah, you do grieve it a a hell of a lot. Real grief starts to happen, however, when it's those surgery days. So when he does have a surgery, uh, and this is probably more targeted at the parents who go through this uh time and time again. Um, it's not really the medical side of it that is tough, it's the human side of it. So he's had multiple procedures since birth, some as early as a few days old, um, which I've touched on previous episodes. So if you go back to episode two, you'll hear a lot about Sol's journey and and throughout these episodes I have discussed this, but he's had two major surgeries so far. He's got another one coming up in June, and the days leading up to it are rough, but the night before is some of the hardest moments you'll have. Because your kid goes to sleep and you know what he's gonna be or she's going to be going through the next day. And you also need to prepare yourself mentally for yourself and your partner for the next day. And that is so hard to do because that's your last like I always think of it now, like when he had his first major surgery, it was like, he's gonna be sweet, he'll be out. It was 14 hours. We waited and waited, and then they said, Can you both come up? And we went in there and he's having trouble breathing, and we've kept the tube in, and then he ended up going into a coma, and we found out he had a stroke during the surgery. So you're constantly bombarded with all this shit. Um, and the issue with obvious conditions like Solz One is it's constant trial and error by the medical team. Like we had a meeting with them a few months about a month ago, two months ago, leading up to this surgery. Um, and we said, you know, we're thinking of moving to here, or we're thinking of planning our next house, uh, purchasing our next house here, and they were kind of like, Oh, okay. And it was almost like, oh, okay, I probably wouldn't go there, or probably wouldn't do that. And I said to them, Well, what's it look like after this surgery? Is it going to be something that is uh you're gonna see him in six months, you're gonna see him in twelve, like this one you haven't seen him for a year and a half. So we've had a year and a half of bliss, and now we've got to prepare ourselves for this. And they're like, we don't know, it's trial and error. And it's yeah, it's extremely difficult just to manage and just to plan and just to be able to move through life with with the purpose you you intended for your family. So when he did have his first um surgery, and I'll I've like again touched on this before, but I will go through this again. When I when he did have his first surgery, you you go in it as confident as you can. Um But yeah, when he when we found out he had the stroke, which means that oxygen didn't get to his brain for a period of time, and then you they said you he may wake up, he may have um lost part of use of his body, he may, you know, we uh to be honest, it was more just like we actually don't know. They threw all these scenarios and it was like, well, let's just wait till he comes up uh out of it. Um because he was in a coma for you know the better part of two to three weeks. There was so much uncertainty about it when he would come out when he and and and again, I'm at work dealing with all this. Like I took a couple days off to be there, but then I was back at work. And lucky at the time the boss I had was fantastic. I was working out in Sunbury, so he would say, just come in in the morning, do 7 till 11, whatever, go to the hospital. But we were staying at the hospital, so I was getting ready for work, and that was some of the hardest moments was walking from I think we're at the uh Ronald McDonald house, uh, and I'd walk from there. To the car park or the hospital to hop in my car and go to work, and my son's in that building. And there were so many times I just didn't want to get in the car. I just wanted to go up and see him and hug him and kiss him. And and it is a very, very tough road to navigate. You become numb a lot of the time. There's moments of hope and then you shop back to reality. I think at one time like he hadn't gone to the bathroom, there, like he may have a get a uh he may get a distended bowel or dis extended bow, whatever it was. So if that happens, then we have to cut him open while he's in this state and work on him. And like I said, you're just constantly bombarded with like shit left, right, and centre. Um but then when he woke up and came out of it, it's probably one of my biggest regrets. Like I was at work at that time. And they brought him out of it, and my wife was there and she was on her own, and when he came out, he was like a little puppy. He was scared, squealing. And I think because that whole time they said to us, he knows you're here. In that coma, he knows you're here, and he's probably going to be very scared, wondering why mum and dad haven't picked him up and hugged him in so long and been with him. And their moments people don't see behind closed doors. They just see he's had a surgery, he's now home, fantastic. But if you're a medical parent, I know how hard it is. And then props to you and hats off to you. And it's only gonna get harder for us because now we've got Atlas, our second child, and I don't know how we're gonna navigate it. You know, you you want to stay up in the room with him, but then you've got Atlas, and Atlas is still feeding, um breastfeeding, so we're trying to wean him off. And there's so much pressure, there's so much anxiety, and there's so much uncertainty. It really did break me as a man. It breaks me a lot of the time. I'll catch myself a lot of the time crying in the car. Uh where we were living, I had long drives. I I would constantly just, you know, have days of tears or days of silence or days of anger, days of uncertainty. I still have a lot of days of emotional breakdown over it because you don't know what's going to happen. You don't know if this surgery is going to be the one. And when I say the one, I mean the one that you know takes uh takes our boy away for good. You just don't know. And that's that's the tricky part to navigate. Um but I suppose it's about working through it and coming out the other side as a couple. That's the main thing. You've got to work through it as a couple and come out the other side, and that's something that we've been doing. Um, we work extremely hard on. And when we do have our moments of worry, grief, um, uncertainty, it's about sticking side by side. That's what my wife and I do better than anyone. And we've started to realize that the family and stuff aren't ever going to understand it. They try to, and I love that they do, but they're never going to get it. Leading up to the surgery, though, in June, um, the feelings towards that are hit and miss. So you forget about it a lot of the time. He was actually meant to have it in before Christmas, then it was meant to be in March. Now it's been pushed to June. Um, and you know it's because his best interests are at heart. And again, it's made our decision so much more difficult, but some days it really does get to me. Especially if I've uh not been present a certain day, or you know, you're tired at the end of the day and at the moment in pain and constantly in pain, and you might not, you know, your painkillers have worn off because of my back injury, and I sort of get a bit sh, you know, snappy and short and sharp, and I think, you know, I lay in bed sometimes, I just cuddle him and I kiss him, and I and he lay he's in bed with us, and and I just cry. And I cry and I cry. And I don't shame away from that. Um, because they're the moments that allow me to regulate what I'm feeling. Um, but then other days I don't feel it as much. But there's always a lingering feeling there. Uh there's always the fear of the unknown, the fear for his well-being. Um and it just drains you so much, like drains so much energy, and it feels like it ages you so much. Like I feel like, you know, um in the conversation with Jaden, I said, I feel like I'm 90. Um, and it just ages you. You just you're so exhausted all the time, so tired. You wake up in the morning, you spring out of bed, and by 12 o'clock you're exhausted, you know, with the drops and his meltdowns and the adjusting of light and everything that comes with it, it's such a hard space to navigate. And now having Atlas is even harder. Um, and that's again something that we we try to make sure that Atlas doesn't miss out on uh moments with with Sol, um, but also moments that he enjoys, and and and you know, you really do have to split up your time as a family, and it doesn't get any easier. Um, it hasn't gotten any easier, it's just gotten more manageable. And again, I think that's from a partnership and a marriage and a relationship that works and it's worked through trial and error, just like Sol's condition, it's trial and error, because we've never had to deal with this ever in our life, and now we have to. So the some of the hardest things though with having a child with complex needs, and I've done talked about this before in an open letter, is it's a there's a system that we have as Australians that's actually set up to fail us. And it's got to do with government support, NDIS. Um, they I truly believe us it's a system that's set up to fail. And I know that it is because of how many stories I've read, how many people I've spoken to, but also how many people I've spoken to personally who were a part of it when they were going to roll it out and said this won't work. And like I've I've touched on before, they've said to us that Seoul doesn't have an eligible disability. And we have been battling with them for four years, constantly battling with them. They change the rules every month, they do and and they do it because they want you to just give up and so that there's more funding that they have in their pockets, and it's a fucking, it's a vicious cycle, and it's affecting so many families. Like his condition is permanent, regardless if they do surgery and put eyelids on him. He still has vision impairment, he's still got these scars, he still had a stroke during his surgery. They're things that you can't take away from my son. And I'm sure there's a lot of parents out there who have similar things that you can't take that away from their child. But you're constantly getting them to advocate for a for permanence. And it fucking blows my mind how that is the norm. Here in Australia, the lucky country, as we call it, with everything else going on, you can't give children quality of life. Um he does have learning difficulties due to his condition. He's very intellectually switched on, but learning difficulties due to his vision impairment, um, his anxiety, he's got there's so many things to unpack with him, but it's almost like that's not enough. It almost feels like I have to take my son and lie to a doctor or lie to someone and prove that he's got some form of autism so that we could get some funding. And that's not right. Like it should be a case-by-case basis. And these are things that we and a lot of families around Australia are constantly dealing with. Um and it does become exhausting having to advocate for your child and advocate for their permanence. You get tired of explaining, uh, but more than that, you get tired of having to, like I said, advocate for your child. And now my wife handles a lot of it. I don't, uh, because I've said some things. Um people on the phone that and again, I'll always say it, I don't regret, because they have no idea what we're going through. Um and these are people who've never met your child. They'll never meet your child. They don't know what the what your day-to-day is like, what it is that you guys go through as families. Um and I've yeah, I've I've hit breaking point many times before where I've just exploded at them over the phone and made some threats. And again, like I don't shy away from it. I don't give a fuck, to be fair, because it's for my child and that's my protector mentality. Now, I'm working very hard on responding, not reacting. Would I probably have responded a bit different? Yes, I probably would have. But at the at that time, when you're under immense pressure and exhaustion, like parents who have medically complex children are, um, it's extremely hard to stay composed every single day. And it's an accumulation of everything. Like he's little, he shouldn't be judged on how he looks, but he also should be given the quality of life that every other child gets and every child should deserve. And it's like I said, it's a system that's set up to fail. Um and the system that needs to get better. Because I'm saying it affects so many families and especially even children with autism. Like they're the the funding's getting cut, the you know, their rights are almost getting stripped away from them. And you ask the question and they can't give you an answer. I'll speak to this person, speak to that person. Every time you call them, it's a different person. It's like a fucking merry-go-round of of a shit show, um, is how I would put it. And it's getting to the point now where I'm more than happy to speak more openly on this, but also more than happy to seek some legal advice and go down a legal route uh in order for to to to hold them accountable. And I I wish if I had the the money or if I had the funds available that I could start my own scheme like they have, but actually case by case basis with families, or set up something where we have a group, a team of people who actually go in and advocate for your child. So you don't have to. We come and meet your child, we come and meet you in the home, we see what your day-to-day is, and we go in and help you because they say that they do that, but they don't, and it's fucking bullshit. Moving back into the soul, the questions he's starting to ask is around sort of school. Um he wants to know when he's going to go to school and how school will look for him, and that's something that's tricky. I don't want him to go to school, and my wife doesn't either. Not because of how he looks, but we always agreed that both the kids would be homeschooled because I don't agree with the system that they and what they're teaching kids right now in the in the school and the educational system. I don't agree with it one bit. I think there's things that kids should know, but there's a lot of things that kids shouldn't know. And I feel like we're playing on their innocence because we know that we'll get the answer and the response that we that the society wants. You know, you should just be able to learn the basics. You you don't need to be knowing about uh yeah, I I won't go into it. Uh maybe that's another episode where I will go into that educational side of things, but he's you know, he's starting to ask about why he has drops all the time. Um, question sometimes why Atlas is outside and he's not. He's you know asked about his scars, why have I got a scar here, Dadder? And the one across his head sort of disappeared, or not disappeared, but it's covered by hair now. Um and then, you know, he's asked me like why did that what did that boy say, Dadda, or what did he say about me? And so hard to sit there because you just want to, you know, let him know that he's just a young boy and he's curious. But yeah, it does get pretty hard and tricky to navigate. Um and it's heartbreaking to explain that to your child. Heartbreaking to try and explain to him why the world perceives them as different when you just perceive them as a beautiful, young, innocent, gorgeous, natured human being. Um, I don't think you can ever prepare for it. It's probably more just around educating your child about it, um, is the thing that we're trying to do the most. And the educating them is so that he becomes confident in himself and who he is. I think as young people, we my generation of stuff, we didn't really get educated on who we were. Like I remember being a uh uh fat kid or a chubby kid as they would call it, um, and I got bullied heavily. And my parents, like, you know, they didn't know a lot of what went on. Um, probably partially my fault. I sort of probably held a bit from them. But at the same time, they wouldn't have had the tools that we have now to educate our children and show them that you are you you're greater than what you think you are. Your worth is so much. And I believe everyone has something to give. Um, it's just the environment and the education that they receive depicts or determines how they um see themselves, view themselves, and conduct themselves. What he has taught me though, however, is a lot. And he's taught me so much. He teaches me every single day. He's in so intuitive, he's so intellectually switched on for his age. Um and, you know, what's normal for him, which is doctors, scans, procedures, constant medical appointments, seeing an occupational therapist, a physiotherapist, seeing all these things, it's it it isn't normal for any other child that I know. In our circle, in our group, there's I don't I don't see it happening for any other child. But he handles it with so much strength and grace, and more than any adult would, more than I would, but more than any adult around me would. And he's taught me so much about resilience, so much about perspective, so much about patience, which is one that we're still working on, but he's taught me so much about it, and probably just loving life for what it is. Um and he honestly inspires me daily. Like when I see him out in public, and it'll be something so simple like putting him in a trolley to push him around a supermarket, he doesn't get to do that often. He's the most excited kid, and he sits there and he does this thing with his hands, like a stim stimulation thing, and he's you know, he starts laughing really loud and gets all excited. And, you know, in the early days I was like, don't like in my head, I'm thinking, please don't draw attention to us more than we already have. But now I'm just like, he doesn't get to enjoy this, so let him enjoy it. And and and that's something that I've changed and shifted that mentality so that he does enjoy those moments more. The thing that I find though that rare disease or rare condition or medically complex parents uh go through that people will never understand is you'll never understand the burnout, the exhaustion, the worry, the fear, and the unknown that we go through every single day. And that's okay, you don't have to, but don't ever try and compare and don't ever try and um try and know. Don't ever try and know. I hate when people try to relate. I hate when people try to know. You've got no idea. The exhaustion, the burnout, it's a different type of burnout. And it's burnout in some of the most loneliest times you'll ever go through. Our life and all these other parents' lives who go through it, our life is not normal. It's not what a normal, normal we would say, life would be. There's no holidays, there's no taking your kids overseas, there's no leaving the kids with someone to go and enjoy your night, there's none of that. Being a parent going through what we go through is the most selfless thing in the world. And when you do do something, you feel so selfish. And I think a lot of parents will take for granted what they're able to do with their children. And the time they get to spend with their children, the quality of time they get to spend. Um And the ability to be able to go and do anything with no repercussions. Like, I don't want to hear, um, and I'm sure there's other parents here, like, I don't want to hear if your child doesn't have anything going on, I don't want to hear how shit your weekend was because the kids were busting your balls at the shops where you were trying to get something or do something. Now I can relate to that and I can understand that, but you're lucky to be able to go out and do those things. So it's more being aware if you do have someone in your circle or a family member or whoever it is going through it. Being more aware about what conversations to have with them. You don't have to go in and ask the nitty-gritty about their child's condition. You don't have to go in and um feel sorry for them all the time. Try and remain as normal as possible. Um when I say normal, I mean just have a laugh with them, enjoy it, enjoy that coffee. But if they do seem a little bit distant or they do seem quiet or you don't hear from them for a while, cut them some fucking slack. Because it is an extremely difficult space to navigate. Closing this out, I wanted to speak probably to the parents who are in a waiting room right now, whether it's uh their child has already got a condition, or they've just sitting in the waiting room and found out their child has a condition or a medical need and they don't know how to deal with it. It's okay to be scared and it's okay to cry. It's okay to not want to be there and wish you could escape this reality. I've been there before. I always thought it was a bad dream. Someone would wake me up from, and it's I've learned very quickly it's not. Um, but it's okay to want to escape that reality. It does get easier, but it also gets harder. Those early moments seem like they're the hardest moments when you first find out and you need to navigate, they actually become a lot easier. It gets harder the more that the long the longevity of it and the more blows you take as a family and as your child takes, the harder it gets. But my advice is it's about being a team, standing side by side through it all, crying side by side through it all, and holding that space for your partner, and more importantly for your child. If I had to speak to Soul right now, or even just with the idea that one day he'll hear this, and I have done an open letter before, but touching on this whole entire subject to Soul, I love you. You should be proud of the person you are, always be yourself, and what I want you to know is being soul or soul, being soul is the most beautiful thing I've ever seen in life. I love you, my boy. I'm Jake Dunley, and this is the walk.