Ep. 16 — The Marriage No One Sees: Love, Grief & Raising a Medically Complex Child

Nobody prepares you for what a marriage looks like when your child has complex medical needs.

In this episode of The Walk, Jake opens up for the first time about the unseen reality of his marriage — the grief, the exhaustion, the loneliness, and the love that somehow holds it all together.

From nightly medical routines to a life that can't be planned, Jake speaks honestly about what it takes to stay together when everything is pulling you apart. He explores the emotional toll on both parents, carrying grief differently as a couple, the isolation no one outside the household understands, and choosing each other daily — even when it's the hardest thing you've ever done.

If you're a parent navigating complex medical needs alongside your partner — this is for you. You're not alone.

The Walk is a space for raw, honest, and non-judgemental conversation about fatherhood, masculinity, and men's mental health.

Follow on Instagram: @thewalk__podcast

Transcript

SPEAKER_00 0:05

Hello everyone, welcome back to The Walk. I'm Jake Donnelly. This week we are discussing the marriage that no one sees and what happens to a relationship. When your child has complex medical needs, uh, this is a space for raw, honest um conversation and non-judgmental conversation. Thank you for always walking alongside me. And if you're a first-time listener, then thank you for jumping on this journey. So let's jump straight into it. Uh I'll open up the the conversation probably with a story that happened around Christmas time last year, so it was the back end of last year, and we went to see all the Christmas lights as a family, which is a completely normal thing for families to do. Uh I think every Australian family does it. Uh, and it's it's just something beautiful for the kids. It gives them a uh a bit of excitement and uh gets them to stay up late, which they enjoy doing, um, as I'm sure a lot of parents will understand. But for us, it's quite difficult. We have to time that that uh that time when we do go and look at the lights and go and and and spend, you know, do those things because of the light sensitivities that Sol faces. Uh, so I'll I'll sort of paint the picture a bit. We we jumped in the car and it sort of surprised him. We said, look, we're going to have a look at some lights, and it was starting to go to dusk, which is extremely late here in Melbourne when there's daylight savings. Um and as it started to get uh darker throughout the night, the the lights obviously get brighter. So we try and time it around when they're just coming on so he can get out and walk around, doesn't have to wear his hat, or if he has to wear his hat, that's fine. And all Saul wanted to do was put his window down, uh, which he never does in the car. The cars uh for us is illegally tinted. We've got letters from the police to say we can have that, and um he just wanted to get out and see the lights, he was so excited. And we got to this house and it was beautiful. And there was this uh this tree that kind of looked like a broccoli, and we called it the broccoli tree, and it was lit up. It was it was beautiful the way they'd done it, and um so I got out of the car, hopped out, went around to his side, picked him up, got him out of the car. All of a sudden, immediately he started screaming and crying and kicking his legs, and so I'm holding him and I put him in the car. I knew straight away what it was, but I was just hoping it wasn't that it was too bright because I tried to time it so perfect. And um, when I got him in the car, he was just crying and he's screaming as my eyes, it's too bright, Dadder, it's too bright. I don't want to be here, you take me home. And these are moments we have all the time, like these aren't moments that happen once or twice, these happen all the time for us. Um so anyway, I put him in the car, and as I'm sort of trying to buckle him back in his seat, he just I said, You're alright, mate, like you know, and I'm it's okay, and I'm trying to calm him down and you know, um, feel what you want to feel. I'm trying to talk him through the whole thing, and and he said something that really broke me, and it kind of breaks me thinking about it now, and it has since Christmas. And he said to me, He goes, Dad, I'll never ever get to see Christmas lights. And he was in tears, and it broke me, man, because I was just like I'm trying to do something for my kids, especially him. Like I've I've I've seen him at his best and I've seen him at his worst. And his worst is you don't know what the outcome is when he's you know, when your kids laying in a hospital bed and they don't have any answers, and you're trying to do something so simple for your family. And it broke me and my wife. Um we were just sitting in the front of the car and we were we were just carrying so much grief inside that vehicle. She's in the passenger seat, and I'm in the driver's seat. And people won't get it. Um people will never understand it unless you do have medically complex kids and you realise the limitations that are put on you. But something so simple as some family time and seeing some Christmas lights was just such an ordeal for us. And like our marriage behind closed doors, and this is what I wanted to talk about the marriage that no one sees. Like, ours is never about fight, uh, fights about money or housework, it's really about I suppose the the unknown and the fear and the medical appointments and the referrals that you're trying to get so your child can get certain funding or we can get certain help financially. Um, and it just wears you down and and it it it it adds a massive mental toll to a relationship, and especially sitting there, like we're just carrying in that moment in that car so much grief the two of us. Um and that's where you've really got to you've got to stick together. Like having a a child is when your marriage starts, I truly believe. When you start a family, it really shows you if you're meant for one another and and and and if you are going to make it, and like there's been times it's nearly broken us, and there's been a lot of that early years I wasn't a good father, and it wasn't like I was an abusive father or anything, I was just mentally not available. Um, and you you do grieve for life that you thought you're gonna have, like before Seoul, um our relationship was absolute bliss. I mean, we had our ups and downs, don't get me wrong, everyone does. You have moments where you think, oh, like you know, are we jumping into it too early? Excuse me, is she you know, is she the right person for me? And she's probably thinking, Am I the right person for her? And but we we we navigated our relationship really well, and there were some moments where we thought maybe this isn't gonna work. But all in all, um, 90% of the relationship was beautiful and bliss. Um, you know, it was full of love, it was full of fun, it was full of date nights, it was full of spontaneous date nights where I finish work on a Thursday and just be like, get dressed, we're going for a going for a drink. Or um, we had nights away a lot of the time. We would we would head away um two you know different places, Airbnbs, eco glamping, whatever, and there was no limitations on us. We we moved interstate together and moved away from family for my work. I was doing FIFO and then I just wanted her to be with me, and we talked about moving away. So we moved to rural WA in a town called Kalgooli. Um, and we made the best of what we could. Um, that way we could get to know one another, but also just get to spend some time together before marriage. Um, but you know, there were so many things throughout our journey that that sort of threw a lot of stuff into perspective, and also, you know, which we've her and I've discussed this previously, so it's not me just putting this straight on her, but we've had the discussion of late where we feel like maybe we rushed a lot of things, and not that I never thought I was gonna marry her and she never thought she was gonna marry me. We knew we were gonna get married, but you know, we we booked a spot here in Melbourne to get married, and then COVID hit, so we we you know we kept putting it on hold, on hold, and then we were like, this may never happen. We don't know what the world's gonna look like, so we eloped over in WA, and it was beautiful. We had two friends that we made over there, Josh and Lisa, who are fantastic people with beautiful hearts, and they came as our witnesses, but we had no family, no um lifelong friends that we'd had from Melbourne. So you're doing all these things in in, I suppose, isolation, um, but you're making the best of it, and it was always just her and I. Like no matter what we did or which direction we moved in, it was always myself and Shan. Uh, and you know, like I said, we we did have our ups and downs, but we're always a solid team. So we got married uh November of five years ago. So what's that? November 20 2020, I think. Um, and then we found out that we're having a baby, uh, which would have been like January or February of the year after 2021. And that's when everything changed for us. Uh the excitement was there. You you you're starting to get, you know, I just wanted to be a dad, she just wanted to be a mum, she's a fantastic mother now, but you have all these goals and dreams, you're out buying clothes, and you're out buying these shoes, and you're looking at baby clothes, and like, you know, she's only 12 weeks pregnant, but the excitement factor is there. Um but then when Soul was born, the shock that came with it and what it did to us as a couple, and not the medical stuff. Well, the medical stuff, yes, was a massive shock to us, but I think the relationship side of it and what happened between the two of us hit harder than any of the medical stuff. Um, like we had no idea what Soul had when he was born, we had no idea that he had anything leading up to the birth. Um, and it was honestly the biggest shock in both of our our lives. Um, and I remember like I've spoken about, I think, in episode two where I spoke about Sol and like the night he was born. I try and erase that so much, and it's sad because it's such a glorious moment um having kids and being there to birth your child. But I've never felt so alone and so scared in my life than the night he was born because we had no idea what what was coming or what had happened. I just remember watching people work on him in his blue, and 400 people in the room, and they're all coming at me. And like I said, I've spoken about this before, but they I think about it now, and it's such a lonely place, you know. And I I still remember like one of the moments I try to erase so much was after he'd been born, we hadn't even held him or seen him or nothing. And my wife had to go and have a you know have a shower, so I helped her to the bathroom, and we just held each other, and she's in tears. Her tummy's gone, or you know, stomach's gone from being full with a baby to now flat, and you don't even get to hold. You know, she's done all these nine months of hard work and I'd say years of hard work looking after herself in preparation for a child, and I tried my best too. Um, probably wasn't the epitome of health at the time, but I did my best. I made some adjustments, but you're both just sitting there, like going, what the fuck? Like, and it's it I wouldn't even say it's what the fuck, it's just you you're numb. And I feel like for the last probably Souls 5 this year, for the last four and a half years, it's just been a sense of numbness that always lingers. And we didn't get his diagnosis until he was 18 months to two years old. So we were lost, we had no answers, the system had no answers for us either. Um, they were unsure of what it would look like, you know. We were told he might go blind. Strong possibility he'll go blind being born without eyelids, and you're watching this little child hooked up to everything in the NICU at the children's hospital, and it's scary to hold them, like you know, that beautiful textbook, like you know, skin on skin time. Like, we never had that. I think I had that like three, four days after he was born, and it was all these wires hanging off him, and it was it was a rough time, and it's been a rough four and a half years uh of a of a marriage and of a relationship, and uh, and a four and a half years that a lot of people will never understand unless you're in that that situation. And if you are, like, I have so much empathy for you and so much sympathy, and I understand so much deeper about what it is and and and how hard it is to navigate that because I'm living it and I'm living it every day, and I've been living it for you know, been living it for four and a half years now, and it's an extremely hard place to be. There were times in the relationship um through the shock and I suppose what it did to us as a couple that I genuinely thought we would separate. Um, and and there was a time where um I just didn't want to be here anymore. Like on earth, I I didn't want to be here. I wrote a letter to my wife, I was just gonna deliver it to her. And just say, look, um look after the boys and or the boy. Um you know, I I I just couldn't bear the couldn't bear the brunt of it. Um, sorry, to be fair. And you know, there was there was numerous times when my wife even said to me, um, you know, I don't know if if if if I want you around much longer. And um now that hurts because like even though he had what he had and and it's not shame, it was just like there was so much love and admiration for him and her, and but it was so rough. And at that time when she said that she didn't realise that I was at the point where you know you you'd almost put it down to sort of suicidal, like I was ready to just end it, and and ready just to not be here and just disappear. And um, I'd never le I always said to myself, I'd never leave as in leave and leave him and her, knowing that I'm still here. It'd it'd be easier if I just wasn't here. Um and I was present for the the time that I was there, but um, she was almost just single parenting soul for so long, and my reaction to it wasn't great, shutting off, delving into work, making work a priority, not them. And just you know, drinking, going out. I was trying to avoid anything that required me to be home. Um, and that guilt stays with me. Um, it stayed with me now for four and a half years, it's gonna stay with me for 50 years, just in those early, early years, especially with him and her. But there in hindsight, now looking back, like there's there's so many things I wish I had done different. And the the what I'm trying to get across to a lot of fathers here is you don't have to have a medically complex child, but to to feel what I'm feeling. You can feel it just with normal children. I feel guilt now with Atlas, and he's not uh got any medical requirements, he's just chaos. Um, you know, and it's it's funny, you you you you you're counting down at times in the afternoon for them to go to bed, then they fall asleep, and you're like, I miss them. I actually said the other day to my wife, I go, just I'm gonna miss those little footsteps running around and chasing me everywhere, you know. It's so cute and it's so beautiful, but I just wish I had been more open with her and spoken to her more in those early years, and I wish I had sought help a lot sooner. It it really took me a long time to seek help and to find the right help. I think that's what a lot of people think is I'll book myself in and I'll speak to a psychologist or I'll speak to uh a doctor or I'll speak to whoever it need be, and that's fantastic, but it's about finding the right help for you. It's not going to be perfect straight off the bat. Um, and it wasn't for me. Um, I did a few psychologist sessions and they just didn't work, and and now I'm at a point where I'm thinking about doing some more, and that's for other reasons. But the love and admiration and support I've had from my wife is is purely off the fact that she held everything together while I was falling apart, and she still does that now with the boys. She she just she's she's a mother who moves with grace and a mother who moves with so much purpose. But I can even see there's cracks forming now for her. Um, and as a father, which I've spoken about, you you want to try and repair a lot of the time. Um and sometimes you just can't, you just gotta let people be in that moment and ride that wave, and you've got to be that support person for them. Every day for us is hard, as a lot of people with uh, you know, just with kids would understand. But when you've got medic medically complex children or children with medical needs, every day's really hard. And you know, if I was to walk you through a natural day for us, so I have to adjust to the light the moment he wakes up. So I can't just get him out of the room and take him outside and go, look, let's uh let's give mummy some time to sleep in. I've got to put it like the where we are at the moment. My parents has a skylight, so I've got to get up in the morning, hop up, put this cover over this skylight, close blinds, do all this, and slowly almost like lure him out of the room because he wants to stay in the dark room. We've got blackout things, blinds on the windows, blackout film. Um, you know, there's there's nights like he still has his his dummy, um, or we call it a choochi, but he still has his dummy, and um, you know, they they got the glow in the dark ring on them, and even that's affecting his eyes now. He'll wake up throughout the night screaming. But if I don't give it to him, that's his comfort thing. Um, so yeah, like our day is always a slow introduction into the day. Like, very rarely do we just be able to get up and go. Like if we've got to go somewhere, it's it's it's a lot of planning and a lot of patience that needs to go into that morning. Um, there's drops every hour on the hour, every single day for the last four and a half years, which is tough because we thought they'll sort this out, they'll fix it, they'll put eyelids, you know, do some eyelid surgery or something for him. We won't have to do drops, but he does drops every hour. Um there's times where he he wakes up at night time screaming, and you've got to pin him down and put him through trauma, you know, pin his arms underneath you and put these drops in his eyes, and like it's it's so brutal. It's like a blood-curdling scream that just it makes you feel like a shocking parent, but you know you're doing it with the right intention. But it it doesn't ever get easier. Like, honestly, it gets fucking harder as he gets older. That's the honest truth. Uh, he's now on this like adult anxiety medication, um, and they're unsure if he's got this anxiety because of, you know, if it's medically caused or surgical trauma or whether it's just something that he's developed over time. But for a long time we couldn't leave the house, we couldn't do anything. Um, not just because of the light, but because of his anxiety, he'd break down. He he's going through a stage now where his loud noises trigger him and certain noises trigger him, so he's got to put headphones on him. And the sad part is with all that, is when he's got his headphones on, I actually feel more comfortable being in public because people look and they take him on face value. And then they see the headphones and they go, I must be something wrong with him. If that makes sense. Like there must be something wrong, don't look, don't question it. Whereas when he doesn't, people are so curious, but they're curious in the wrong ways. Um which makes it extremely difficult as well. Um, because it's a constant look, stares, judgment. When he does have a meltdown in public, people think there must be something mentally wrong with my child, and or it's that judgment of like, you know, telling to be quiet, or and like I'm not very good with it. I just tell people to, you know, fucking stop looking, or it's not good. Like the way I sort of handle it, my wife handles it with more grace. But what I've started to work on is just like really being content of being with my child, being with my kids, um, and just focusing on them when we're out in public. So, like if the day is too sunny or too glary, we're inside all day, we're constantly adjusting windows, blinds. The other day he was just with his carpet uh my parents' house, and he was just playing freely as a kid, must have got some fluff on the carpet on his hands, went in his eye, full meltdown, all the blinds get closed, and like this is a day-to-day thing for us. Like, it's something that I never thought my my relationship and my marriage would would go through, like would be put through. Um days out at the park or outside, are few and far between, um, which sucks because now that we've got Atlas and he loves being outside and he adores Soul, but if I take Atlas outside and Soul's not there, I feel guilty, and my wife feels guilty. Um, and you know, there's times where I have taken Atlas out just to just to calm him because he wants to get out and you can see the in the anticipation of being outside, and soul stays inside, and then you know, he wants to come out and he stands at the door like a lost puppy, and it's so difficult to manage. And now we're talking about you know, school and homeschooling and what this is going to look like. Like I would have homeschooled my kids regardless of medical conditions or not, um, because I just don't trust the system and what they're teaching kids these days, and I didn't like it when I was there, but it's it's it's so tricky to navigate. Like, you know, he's got this vision impairment now, and you can see like he sort of it's hard to do it, but he sort of looks at your side on like that with his eye, and um to try and focus, and it's it's just so fucking hard to manage. And you just don't know where to go, what to do. You know, we never wanted to be split up as a family, but I think the reality of it all is that we're gonna be split up as a family. Like we're Atlas will have his hobbies and Sol will have his. And it's not gonna be like, oh, they're both playing footy for fucking whoever. It's or you know, they're both playing tennis for whoever, it's gonna be you take Sol this weekend, Shan, and I'll take Atlas this weekend, and or vice versa. And we'll all come together at the end of the day and and recoup and regroup and talk about our days, but it breaks my heart because I just want them to be able to do things together. And I've spoken about you know being in public and the stairs and the judgment. Um, what what drives me insane probably the most out of out of anything is the strangers in the street uh I understand, but it's the family and friends who don't understand what we go through, and they'll never understand. And I've come to terms with them not understanding what we go through. But when they start telling me that he's just being a normal child, that's so normal. It's like you've got no fucking idea what normal is for us. So he is acting at times. There are traits of him that are just you know what a normal four, four and a half year old will do, but you you can't tell me that a lot of the stuff that we go through is normal, and you know, people people think they know how to be around my my children, they don't have any idea. And I see them try and understand and try and help and try and work in with our beliefs and what we do, but don't. Try and tell me how to, you know, raise my child when I've been there since day one. I've sat beside him not knowing if he's going to come out of a coma or not. Um, I've had to nurse him and help nurse him through his recoveries where he's scared and he's got scars over his head and down his face. And like and my wife's done the same thing. And I always find too, it's really weird, like people without kids will tell you how to be a parent. So you've got no idea. Like, go and have kids and then come and see me. And it's funny because I've got friends and and stuff who do have kids now, and they're like, Yeah, it's fucking hard. And I was one of those people, like Josh and Lisa, I was talking about, they had the a young boy, um, beautiful young boy when we were living over there. And I used to be like, I can't wait to be a dad, it's so easy. It's just it, but like, I wish I could go back now and just say to like Josh, I'm like, man, I'm sorry. Um, I should never have made that assumption. Like, uh, it's so hard being a father. Um, and and I feel like I constantly need to advocate for soul's condition and constantly need to advocate for my child. Whether it's with the MDIS, whether it's with uh government support, whether it's just with people day to day on the street, and then you you step out of the house every day, already on the back foot, you're anxious before anything has happened. And when that happens, you you're not really there because you're already worn out, you're burnt out, you're frazzled, your mind's just not where it needs to be. And for us at the moment, I think there's zero light at the end of the tunnel. So all we have to have is hope. I think hope's a beautiful thing. Um, and belief. You need to have belief. Like I put into perspective of me doing this podcast, like, there's a belief here that this will work. And there's also a hope that this will work, but the belief outweighs the hope, and it's same with my child. I hope one day that he can have a normal day like a normal child would with no requirements. But there's a belief that it will happen. Just when it does, I don't know when, but I'm believing that it will. And with hope, you carry a lot of worry and guilt, and that's every single day. I worry every day. Every day I come here, or in the past have gone somewhere else to record podcasts or whatever. Um, there's a worry. I wait for my phone to go off, or I wait for my wife to say, like, I've got to take him to the hospital, because that was our norm for a long time. It was, I think she was going to like 15 appointments a month at the start. And that's such a hard thing for a first-time mother who's in recovery to have to be put through. Then you've got the nights that no one talks about. So, like I said before, the restraining of him, what happens after, and you know, the marriage that sort of lives in the shadows, and it's almost like you can't talk about it because people don't have the capacity to want to understand. But when he does wake up and his eyes are dry or they're sore, like and he's screaming, it's so fucking brutal. I wish it upon no one, I wish it upon no child, no parent to have to do that. And it happens a lot more than people know. So when I am tired and when I am worn out, um, and I am short and sharp with people, people just take it as Jake's a cunt. I'll be honest, that's what a lot of people think at times. Jake's just a cunt. But it's not that I am. It's the fact that I am so fucking mentally exhausted and my wife's so exhausted and depleted mentally, physically. So our social battery is very small. When he has does have those moments, it's then not just like it drops her in back to sleep. You've got to sit there, console him, and let him know that he's okay and that he's safe. And then once he's asleep, you then lay there in the darkness, your partner side by side in tears, just going, How rough was that? And that can be multiple times in a night. It can be night after night after night. And that's something that, again, people who have children with needs will understand. And what I'm going to say here is you don't have to justify anything to people. You do what's best for your family, you're best for your child. You know them better than anyone. And whatever works for you, works for you, and fuck everyone else, because that's the point that I am at. I lay there afterwards, I lay there most nights, my mind runs a million miles an hour. I get very broken sleep, especially with this back. I've been uncomfortable, so my mind's been going even crazier. Um, I've just been sitting there thinking about, you know, the what ifs. What if he, you know, did have eyelids, would it look different for us? Would our life be different? Um, his upcoming surgeries, I've spoken about that, where it strips away a part of your child for a long time. And during the surgery, before the surgery, you know, you're trying to spend as much time with him because you don't know what could happen during that surgery, especially with him, all the work's up around the head, the brain, the eyes, you don't know what could happen. Um, so you spend a lot of time just thinking what if. Um, and you know that your wife's gone through the exact same thing, but she just does it in silence normally. And what people don't see is that's the marriage that no one sees. They're the moments that no one sees, no one will ever understand, and no one will ever uh fathom, I suppose, um, ex unless you're in this situation. Exhaustion does a lot to a marriage. Um, we're going through this at the moment, we're going through it for four and a half years, but we when we do fight or when we do bicker, it's really what's the underlying problem and what's underneath that. Um like I said, we don't fight about dishes or money or housework or we fight because we're running on absolutely nothing. Um, it's an exhaustion no one will understand unless you've got complex needs. You're running on empty day in, day out. And if you're like me, trying to follow these dreams and aspirations to be able to have a better life for your children, be home more, help your wife out more, it's even harder because you've got no energy. You know, I try and do everything right, I try and eat right, I try and, you know, bulk creatine in the morning in water to get the brain going and minimize my caffeine the first two hours. I try and do everything, and I'm telling you, by midday, one o'clock, I'm the most exhausted man in the world. And um it it it's fucking hard. It is hard, and you it's it's not tired. And people need to understand that it's not that you're tired, you're depleted mentally, emotionally, physically, and that's every day. And it does not stop. Usually I'm the one to break first, like usually I'm the one to snap or just bottle up so much. And I talk about opening up to your partner, but you could talk about this every day before it just becomes uh, I suppose, painful for the both of you. So there's a lot that you do bottle up, and then I break and then first, and then she does. And when we both break at the same time, I actually find it easier. And it's sad that I find it easier, but I find it easier because we're finally showing that we're feeling the same thing. Uh, we've had a few bickers over time where we've spoken about uh me feeling like I'm the only one to talk about these things and worry about these things, and she doesn't, but she's starting to open up to me now, and it's nice knowing that we're both in the same boat, both in the same fight. And when you are going through those moments where it feels like you're the only one going through it in a relationship, um, it's very lonely. And I've been extremely lonely for four and a half years. And I've got a lot of people around me, people who think they're doing the right thing and supporting and and all that, but it's an extremely lonely place. But when we both break and crack at the same time, we actually both see each other for who we really are and who we truly are, and I find it a beautiful thing. People can say what they want, but it's that moment where you both know that you're both going through it and you're both feeling it, and you just feel comfortable. You're not lonely anymore. You got someone else beside you, and you can work through it a lot more harmoniously. I think the loneliest I ever felt in the last four and a half years as a father and as a man was when he was born that night. Because my wife was jacked up adrenaline-wise and everything, so they're all concentrating on her, but no one like everyone was just saying, Oh, he's okay, Mr. Dunley, he's this, he's that. I just felt so lonely. I just wish I had someone there just to hug me and hold me. And you can take that as you want, like I've said, there's strength and softness. I just wish I had a support person there. Um, and even though she was there, and I know she's always there, she just wasn't there in that moment, and I probably wasn't there for her either. The kind of pain or this kind of pain is sort of impossible to fully share. You you sort of carry, I carry my own version, she carries hers. It's just about trying to understand what the other person's going through. In my experience, it's it's with trying to understand what she's going through and holding that space. And I think she feels lonely too. And I'm always trying to fix that for her. I'm always trying to encourage her to go get her hair done or go do this and um go catch up with a friend. And you know, I it's very hard with young kids, especially at the moment. We've had a few times where she's gone to catch up with friends, and soul's had a meltdown, or they don't really get a chance to talk. Her friend's got a child, um, like one of her friends lives down the peninsula, beautiful lady, like amazing, beautiful kids. And another one lives in like uh Bayside, Southeast. It's uh Jaden who was on here, it's his partner, and they've been best friends for years, and then she she's got a daughter, and like it's beautiful when they're all together, but you're always on edge, you're waiting for something to happen, and they don't really get a chance to talk, they're just parenting in a harder environment. And you can't fix loneliness by trying harder, you you can only fix it really by being honest with one another, and that's what we've had to do. We've had to sit there and really be honest about each other, and I've got to keep telling her, like, I'm struggling. Um, and now she's starting to tell me that. But I know she holds more than I actually see. I I've learned about her through this entire um journey more than I knew in the first five years before children. She researches everything, every medication, every specialist, every option. She's she's amazing, she's incredible. Um, I'm so lucky to have her as my wife. Um she carries the mental load of soul's entire medical world on top of being a mum to two boys, and how the fuck she does it, I don't know. But like I said, the admiration I have for her, and um, she's definitely a one in a million mother. And I've had some people say that to me, like she's an incredible woman, but she needs to know that. Um, because you tell her, and she's just one of those people, she doesn't do well with compliments. I don't think we all do, but um and then she's had to deal with on top of all that, having a husband who hasn't been present the whole time. And um yeah, I've probably made her feel really lonely at times, and I just wanted to know. Like, I look at her every day and I still get butterflies. I can't explain it. Um but even after all the the darker sort of moments that we've been through as a couple, um it's always her, and it'll always be her. Um but I do, I I I I do I do grieve the version of her that I that I had prior to kids, and I'm sure she grieves a version of me that you know she got before children. But if there's one key takeaway, um is that just that I wanted to know it's always her, and it'll always be her. And I I I I yeah, I can I can get pretty emotional about it because I I've left her in dire straits a lot of the time. And I I wish I hadn't. I wish I could go back in time and and change a lot and just hold her in certain moments. But yeah, I love her to bits. She's an amazing woman, and words won't do justice to to how I feel about her. If you're a if you if you're a couple going through this um complex medical needs, parenting and the medical world and rare diagnosis, and your marriage is you know, cracking under the weight of all the pressure. Coming from me, I'll I've I'm living it and I've lived it. Like it gets better, you just have to stick together. And when I say it gets better, there's gonna be times where you feel like it's it's it's it's past and it's bliss and it's graceful, but there's also a lot of times where it's not going to be that. Um, and you just need to be comfortable with one another. Um, you have to be open with one another, and you just have to stick together. That's the main thing is sticking together. Just forget everyone else and focused on your child and focused on yourself, focused on your family. Their needs are more important than anyone else's. So if you do get the judgment from people, if you do get the looks, like fuck them. And a lot of the times it is going to be from family, it's going to be from friends. I get it all the time. I speak to soul in a certain tone because, you know, I want him to have a baseline level of respect, and I get stares from family and friends all the time. Man, probably not friends. The younger generation sort of get it and they're a bit more sympathetic, but the older ones, it's sort of like, you know, well, give him a clip around the ears and tell him to stop. But it's like that's that's not work. That never works for us, and it's it never worked for us as children. Why the hell would it work for my son? And that's not how I parents. So um cut me some fucking slack at the end of the day. Um, but yeah, just focus heavily. When you're in those moments and you're worried about judgment, just like hone in on your child and focus on them. That's my advice, and that's what I'm trying to do every time I step out of the house or every time I'm in an environment that I'm uncomfortable. I just look at them and hope that they're smiling and they're having fun and nothing else will matter. I'll close it out sort of talking to my wife here, um Chantel. Because I know she's gonna hear this. She she she tries to listen to the podcast whenever she can. She's slowly playing catch up, and I don't hold that against her ever. Um, she's a massive supporter, she's the one that said get this space, she's the one that's having me go and do it. It'd be great for you. And she supports me even with this whole coaching journey of working with a coach. She pushes me down that route every time. But I just wanted to know that I'm proud to be her husband. Um and I'm proud that she is my wife. And I want her to know that I see absolutely everything that she does, and the things that no one would notice or she doesn't even notice, I see that. I see that day in and day out. The weight that she carries and never complains about, and she does it with such grace and beauty. I see it all. And I just love you so much, Chantel. Or Shanny, as I call her. But I know she's gonna hear this, and I didn't tell her that this was gonna be at the end of this, but I just yeah, I wanted to know how much I love her, how much I appreciate her. And like I said, she carries more than a lot of people will know. And for all the people out there in our lives that question how we parent, question everything, don't ever question Jan. Question me. And I'll probably tell you to fuck off. In a polite way, but um, question me or question decisions we make, don't ever question her. She's a mother who has spent 80% of her time indoors for the last four and a half years. It's not the motherhood that she envisioned, but she absolutely adores those boys, and I love her so much. Sorry. So, yeah, this episode, like I said, is the marriage that no one really sees. I will go into it probably more over the course of the next few episodes and talk about tools that we use, um, things that I do to regulate and things that we speak about and you know how we how we navigate the world together, but it's not perfect, it's not easy, and it's really just held together by love and decisions to keep showing up, both of us, day in, day out, not just for ourselves, but for our partner and also our children. And showing up is enough, and that's everything. Like I said, presence outweighs everything, and in a marriage, showing up and understanding outweighs everything. I'm Jake Donnelly, and this is the walk.