Episode 2: siblings

~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:15

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  00:15

I'm Rina

Lauren Fenton  00:24

And I'm Lauren.

Rina Teslica  00:25

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  00:39

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language and quite frankly, some brutal honesty.

Rina Teslica  00:59

Because really, what the f**k is normal anyway?

~music - “wake me up loud as clouds, all my love for you”

Rina Teslica  01:02

In today's episode, we'll be talking about siblings and sibling relationships, parenting when disabilities in the mix, and the decision to have more children. I'm the mother of one, the lovely Lua and having more children is definitely on my mind at the moment. So, I'm especially excited to listen to our lovely guests and Lauren's perspectives on having more than one child.

Lauren Fenton  01:36

And for those who have not listened to the f**king normal before or have forgotten. I have two children Bea who is six with special needs, and Olivia who is eight. And I am absolutely delighted to have not just one guest today but two guests joining us to talk about this topic. We've got Gemma and Jess. Gemma Sherlock is an interior designer and mum to two boys. Jasper who's six and Spike who's three. And she's a really good friend of mine. We actually met at a physio class that both Jasper and Bea went to. Jasper has cerebral palsy and drug resistant epilepsy. He also has hydrocephalus I think I said that right.  And Gemma is a wonderful mum and a great drinking buddy to boot. I'm also really excited to have the lovely Jess joining us. Jess Honeyball, best surname ever, is a TV producer and director. She's done lots of fantastic TV. The one I want to talk to her about the most though is First Dates. She's also a mum to three boys, including twins. Oh my god! The twins: Dylan and Freddie are four, nearly five, and her littlest Leo is two. Welcome Gemma and Jess.

Rina Teslica  02:49

Hi, how is everybody? When I came in, you were both saying that you're very tired today. So what's going on with that?

Gemma Sherlock  02:56

Urrgh, it's just having children isn't it. It's just completely exhausting. Yes, my night was broken. I know Jess' night was horrific because Leo was vomiting most of the night.

Jess Honeyball  03:08

Yip the whole night and then woke up at four wanting some milk which I foolishly gave him because I was you know, it was four in the morning, and then he very promptly turned around and just 'puke' - it just all came out again.  Yeah - so two bits of sleep - I'll not go into that.

Lauren Fenton  03:29

Thank you for coming. Oh my gosh, especially after that night!  I mean, why don't you kick us off Gemma and tell us a bit about yours and Jasper's story.

Gemma Sherlock  03:38

Yeah, I mean, as you said, Lauren, we've known each other for most of Bea and Jasper's lives now. And I think when we met,  they were still quite little because they weren't walking yet, they were just learning to walk. So I think you and I were still in the kind of aftermath of the hurricane of understanding, you know, that we had children that had complex needs, and we we didn't know where they're going to walk and what life was going to be. So we've definitely been on this journey together. And the same was true with Jess and I because we've known each other for years and years and our decision to have children.  Obviously, we didn't have our children together but our decision, we talked about (laughing) but you know, we were there in those times together. So, for me personally, Jasper was born in 2015. And we'd spent a good few years trying to get pregnant with him. So he was a long awaited, joyful, much wanted little person.  And yeah, we'd had lots of rounds of IVF, including miscarriage, and yeah, we couldn't wait for him to be born. And when he was born, it was a normal birth. It was a little bit delayed, but unfortunately for reasons that we'll probably never know he suffered a massive brain haemorrhage. Probably a few hours after he was born, and was rushed immediately to Great Ormond Street and had his first brain surgery there in the early hours. And we were there, sort of on and off, for - well we were there for the first three months and then on and off for six months. And he underwent lots and lots of surgery in that time. You know, probably at least 10 surgeries but most of them on his brain.  But today, he would walk in here now and you may not even notice that he had a disability he's got mild cerebral palsy on one side, which is probably due to scarring on his brain from the from the initial bleed or possibly surgery afterwards. And his biggest struggle in life is his epilepsy, which is a kind of drug resistant epilepsy. So, that is just something that we have to manage all the time. So lots of hospital visits and night seizures and not much sleep. And shortly after his birth he was fitted with shunts that drain water from his brain because he has a condition called hydrocephalus which is water on the brain which happens when you if you have something like a stroke or a bleed in the brain. You get blockages which stop the water flowing through your head into your spine. So he has shunts which allow that water to flow into his stomach and yeah. So, the decision to have him was very much like a positive decision and the trauma of afterwards probably put us off having another one for some time. That's in a nutshell how Jasper came to be yeah.

Rina Teslica  07:06

Wow, wow.

Jess Honeyball  07:08

Truly emotional still hearing you talk about it. He was so little having those surgeries.

Gemma Sherlock  07:12

It was insane when you look back at the videos of him I mean and also blows my mind that anyone is able to do brain surgery on a little baby over and over again,

Lauren Fenton  07:20

And don't underestimate yourself as well. When you're going through that, you are just going through it, you're like, you're in it - but, I always find when I think back to traumatic times in Bea's little life visualising myself in that situation is quite hard as well like how did you get through it? How do you know it's really hard?

Gemma Sherlock  07:39

I don't know because I, obviously, and we'll talk about this I'm sure, because second time around with Spike I remember the midwife, ahh not the midwife - the health visitor who comes to see you remember they do that surprise visit and they turn up I think she thought I was some sort of deranged mother possibly needing like to be shipped away because I was just grinning and smiling and like: everything is just so amazing!! She was like: "Is everything okay with you and the baby?" and I'm like "yeah, I'm in my own bed, I'm breastfeeding him, I've got my boob out, I don't have to like weigh a nappy. Like - my loo is there". You know, I went from giving birth, to being in parent accommodation running across the road wondering 'Is he going to make it for the next five, please let him make it for 10 more minutes, please make it tomorrow and then into surgery, out of surgery, into surgery out of surgery and the trauma after the surgery. Nevermind like what's going on after you give birth with your body and all of that stuff, but anyone that's had a baby it's . . . and then all the stuff that's on top of that. And you also expected in hospital to just, most of the nurses working there, when I was there, were quite young. I mean, they were proficient but a lot of them hadn't had children. So there's an assumption that you're the mother, you must know what you're doing. Well this is my first child, like I didn't know how to change nappies or hold them or you know, any of that stuff I was like,

Rina Teslica  09:00

Yeah let alone and you know when they're connected to all the bits . .

Gemma Sherlock  09:01

yeah and all the tubes and the beeps and it's all going off, all night people coming in. So it was six months of Yeah, insane, insane trauma when you look back on it. But hopefully that's my trauma not so much his.  I mean,  obviously it is but he doesn't know any different. So. We definitely made a decision I think about a year after he was born, Rowan, Rowan's his dad, my husband, and we just said we are not having any more children. Like we just couldn't do it to Jasper. Can you imagine if it happened again? There's no way we can do that . . . sure, sure enough . . . times moved on . . .

Jess Honeyball  09:20

We also had an IVF journey to fall pregnant and I had recently been diagnosed as celiac. So anyway, for that's just not worth getting into but my body hadn't quite healed. So I just wasn't able to get pregnant. They couldn't find out a reason why, but I think that's probably why.  And the first round was, they didn't even get to putting any eggs back because all the eggs had stopped developing when they fertilised they didn't know whether that was a lab error or an egg issue or a sperm issue or what so when it came to the second time round, "we got a good egg haul again, you know, but we don't know if the same thing is going to happen". So even though, how old, I would have been 35, They were "I wouldn't normally recommend you put two back in but why not? This might be the only chance you get because there was sort of no explanation for what had happened before". So we did put two back in and then they both were viable you know they were growing so I got really massive, two babies, two placentas . . And you still looked amazing! . .  I'm not sure my tummy now would agree with you, but had a normal, like on the face of it, a normal pregnancy and had scans every two weeks after certain amount of time. But it was a shock so that when when the twins were born, Freddy was the first out and I was you know, in a kind of very different place having pushed for I think, an hour or something and then hadn't begun, this isn't about the birth but it was pretty horrific and then had an episiotomy and then by I mean hearing Dan describe what actually happened when they use the forceps to get the babies out. He's sort of imagined, this sort of delicate, like pop, and it was you know, he said it was like mediaeval, like feet up, like three or four doctors hanging on the back of this obstetrician.  Gorry times, so she, yeah, so when Freddie came out, I was like: ones out, right I'll just kind of regroup. And Dan was like . . Yes, that to. But he was "hang on. I think there is, is there something wrong with Freddie's arm?" and sort of went over to were Freddie was, I mean, he had sort of come on my chest for a bit. But you know, I was just like, so wobbly from all the drugs. So "I don't feel like I can hold him" like, "I think maybe just take him away for a minute. And I'll just get pushing again."  And they noticed that, yeah, his arms stopped below the elbow. He didn't have a forearm or a right hand.  And I don't know if they noticed at the time but he had a fixed elbow, so he sort of can't - It's a real shame in terms of any prosthetics for now, because it's quite limited. The use of prosthetics for him or, you know, at the moment anyway.  Amm, and then I pushed out Dylan, still like 45 minutes later, which is a really long time for twins. So that was all pretty difficult. And then I remember so vividly, even though it's in a kind of,  you know, on a different planet. Dan saying to me in recovery, you know, listen, we need to tell you something about Freddie.  God, I'm going to well up . . . So, that, that was a big shock.  But you know, he's really healthy otherwise.

Gemma Sherlock  13:22

And, can I just say also as his godmother, he's just the most charming, handsome little boy, I mean, they both are, all three of your kids are, but Freddie - he's just, he's just got the 'je ne sais quoi', he's just dreamy. And he's just he isn't held back by his arm. Well of course he is, but not in a way that he would know or that would that he's just happiness. He really is . .

Jess Honeyball  13:46

Thanks, he is - He's an asshole to his brother! - The younger one.  But but very competitive, which is probably why, yeah, as a twin or whatever. He's certainly most competitive of all the boys.

Gemma Sherlock  14:03

But can I ask you is that, is missing something like that on, on prenatal scans? Is that quite common with twins? Or . .

Rina Teslica  14:12

Did they pick it up even in the scans? Or

Jess Honeyball  14:14

No it was never picked up, so it was a total surprise, total shock, which is kind of odd when you have two weekly scans? Yeah. So and then there was a kind of investigation? Well, the lady who's sort of the head, who does, I can't think of what her her title is. But she came in and was like, obviously, slightly kind of trying to manage and we wouldn't have done. A friend, good friend of mines consultant, and she said, you know, you could sue and that wasn't in our interests, but it would have helped to have known perhaps to prepare a bit. I don't think it would have changed our decision to go ahead, you know, of course not, but it Yeah, it would have helped those early weeks, which are so hard anyway. And you know, I just had lost all control of my bladder for months! And so just dealing with twins and your own body, as you say, and then sort of, almost like as the secondary thing, oh, and actually I have a baby who's got a disability and kind of realising that his life will be full of challenges that yours didn't have, or childhood anyway will be full of challenges that you didn't have,

Rina Teslica  15:05

or that you even understand because,

Lauren Fenton  15:31

exactly, I think our experience of disability, certainly my experience of disability up until my Bea was born, was very, very little. And you've been kind of, unfortunately, socialised in such a way, and brought up in such a way that you probably do have these awful preconceptions, and fears - yeah

Jess Honeyball  15:55

Just not much exposure, no, to anybody with disability, and a few of my friends that one of my friends, Will, said, "I went to school with somebody with one hand, he was the best football player on the team". And, you know, some people have, you know, one person perhaps, or certainly with this kind of physical disability, and I just hadn't met anybody, I was like, what this is, anyway. 

 Gemma Sherlock  16:20

So, yeah, along that line, I mean, at primary school, I just went to my local primary school we had kids with, with all sorts of disabilities and challenges, and that was totally normal. And then going off, I went off to like, to private school where you're selected based on your academic credentials, and nobody who's like,  got the money and, and like, selection process to get to that point, then they're not ever looking for anybody that's, that's got difference, or, you know, challenges in that way. So the segregation happened for me quite early on. And that's so that's just so terribly sad. And I really, I don't know how to change that for for our children that you know, in any, and even now, in the state system, there's still a massive segregation. And anyone with any complex needs, probably at some point will end up going to a really specialised school.  Because there just isn't the care and money to, to keep them in mainstream system,  to save,

Rina Teslica  17:19

but then your children will have that sort of extra little thing because they're used to a sibling, that's got a disability, so that's gonna just change the way that they perceive the world. Totally from other children, you know, so I mean, I've asked you about Olivia, and how she talks about Bea with her school friends and how she introduces Bea and it's, you know, so much more worldly than her peers.

Lauren Fenton  17:41

Yeah, I think that is a real benefit to the siblings of a child with a disability that they have had a very early exposure to differences within that family. I mean, you could choose to have other things as well, if you've got a parent with a disability.  There are definitely advantages in terms of how her, for Olivia anyway, in terms of how her world views been shaped, and how she how kind of matter of fact, she is about everything. So because Olivia was there before Bea, she was nearly two when Bea was born. And we we, you talked Gemma, about wanting to put off having another child for for a long time. I'm not gonna say Olivia was like a super easy baby. But she was she was pretty straightforward. So we kind of wanted to get on it again. We weren't getting any younger. So we tried to get pregnant again quite soon after Olivia. So Olivia was 21 months when Bea was born. And so there's quite a small age gap. And I think the the trauma that you kind of described in those early months, we definitely went through that with Bea in terms of, you know, she was in hospital for a long time, we just kept getting more information and more diagnosis and lots of uncertainty about what 18 q deletion syndrome was what does that mean? What's her future look like? But we had this additional factor in that we had already had a child who was one and like she was staying with my mum when I was in hospital with Bea and then I just didn't come home. And then Bea didn't come home for quite a while. And kind of managing that at that time was obviously an additional kind of worrying concern. I don't know what, when she was so little Oh, she was so little then that now. She doesn't remember a time pre Bea and you know, she's always been in her life and they're just wonderful together. But I think all those early days of hospital appointments and Bea didn't look the same as other babies. She had this huge kind of black hearing aid with wires. She had her feet in either plaster cast or like sort of orthopaedic shoes and she was fed from like special bottles and you know there was lots of different kinds of things different accessories of your like that she she had and Olivia just really took it as well you know that's my baby sister you know she didn't know any different and she became very matter of fact so it's just no yeah really normal like normalised it and was great at telling other kids. I remember once going into a friend's house and it was just after Bea had got her boots so she had like little boots and bar that kept her feet in a certain position. And they were like this big metal bar in between them. And then like strapped on bits, which just was a total pain to joining the shoe. Yeah, to keep her feet in turn out. Yeah, like, and the girl who my daughter's friend was, 'that is so cool'.  Cuz she sort of saw it as like some sort of like a skateboarder or whatever. They looked a bit like that. She was just so mesmerised by her boots. And it was the nicest thing she could have said. Yeah, and then yeah, exactly. Olivia Big Sister, even though she was about two at the time was like super proud. Yeah. Yeah, like 'those are her boots'. You know.  I just love that I love that kids can be so yeah unfazed by these things, because they don't come with this baggage and preconceptions, and they just take the world as it is around them. They take on face value.

Gemma Sherlock  21:36

What? Because Jasper's got a half brother and sister who are quite a lot older. And Jim is his older brother, and Georgia, his big sister. And we had a quick conversation about how Jasper's disability had sort of had, it had an impact on their on their life or how they felt about things. And Jim was quite heartfelt about it. He, he obviously grew up in a similar background to me, like quite privileged, middle class, everyone's the same, everyone looks the same. And then along came Jasper. And he just said it opened his eyes to the fact that disability is normal, you know, and that he was quite shocked by the reaction of some of the people around him who had just had no concept what it is to have a family member or friend with a disability. And they both adore Jasper but it had a, retrospectively, a big impact on them as young people in their late teens, early 20s. For the better, you know, what an incredible thing to have come into your life when you haven't really been exposed to different. It's really moving. He won't mind me saying because he was I know it's a bit mushy, but he's such a sweetheart and I just, I just adore him. I think he's incredible. And yeah, he's they don't see they don't act strangely around him. And they don't see it as different in the same way that Olivia feels about Bea but it but it is different to them because they don't have any experience of it. But yeah, it's open their minds and their eyes.

Lauren Fenton  23:16

That's so lovely to hear. Oh, gosh.

Gemma Sherlock  23:19

Yes but he sent me a message last night because I'd asked him this very question. And he said 'the main way in which it has impacted my life is that these things can happen to anyone . . aww Jim . . I'm going to cry . . 'These things can happen to anyone. And thatmush. it's so important to have the support and care from a strong family. I've also noticed the ignorance of many people who have never had a disabled person or family member close to them, which is totally infuriating. But you can't blame them as you just don't get it until you're faced with it. I understand so much more about his disability and I don't even see it as a disability more as a superpower. He might experience life in a slightly different way to us, but it will develop him in a way that we won't understand. It's made me research and understand a lot more about challenges faced by others. Sorry, that's a bit mush.  But he's just opened my heart so much and I love him to absoulute bits.

Lauren Fenton  24:14

Aww

Gemma Sherlock  24:15

Aww and I know that Georgia will feel exactly the same.

Lauren Fenton  24:19

Yeah, and actually, that's a genuine point maybe for a future episode, it would be great to have somebody on that is an actual sibling, we're just talking

Gemma Sherlock  24:29

what it means to have another child.

Rina Teslica  24:31

Yeah, I mean, for me, the reason we wanted to discuss this is because I'm at that stage so like it's been six years nearly since Lua was born. She was my first she massive trauma with her. We spent several months in hospital kind of touch and go for ages. She has a lot of "accessories", with the tracheotomy and the ventilation and all of the amazing clothes (all agree) I mean we try. We try . . . Thank you, thank you. And my partner and I are kind of at that stage, like, we're not getting any younger, we do want more children. I've always been brought up, when we've discussed it with family members, it's always been there, you either have to or you have none - sort of thing, because it's, you always think, Oh, they're going to be so lonely being alone. Why not give them a sibling? But then obviously, when you've had such trauma with a child, it's like, well, will I put myself through this again, what if having another child impacts the way that I am with my previous child? You know, they require so much attention and all of the hospital admissions and all of the sicknesses. Can I, as a parent, give as much to another one? So I'm very interested to kind of hear your decisions to have more children. And what were the pros and cons? Essentially?  Yes, go - Jess - what about you?

Gemma Sherlock  25:52

I think you, I mean, you were already having to deal with many of those things without a choice, because you had twins. So you already had two and you already had somebody fighting against it and trying to give to both? I don't know if that's relevant. Not necessarily the decision to have another child. But . .

Jess Honeyball  26:12

it's weird, because in our minds, think in my head, I'd always wanted three kids. And then when it was just taking a while, and then when we started IVF, yeah, this is never gonna happen. It's too late. And then having had twins. I mean, it wasn't that the first time around was so great. And we were like, Yeah, let's have another one. So it was, I think, in many ways, and this sounds so selfish, that it was like I was robbed. Oh, that like, wonder, you know, that kind of baby bubble? The magic? Yeah, the one. Like you have with Olivia, the, that felt like, you had that proper bonding experience. Of course, I bonded with both the twins. But it was like firefighting for so long, and getting routines and blah, blah, blah, and also - So Dan, and I were like, well, you know, we do have other eggs in the freezer. IVF wise. You know, let's just not go there. Why don't we just see if this happens naturally. And I really, I really didn't believe it would happen naturally. And then I guess just, I had not eaten gluten, you know, since my diagnosis, and I think my body was just ready was healthier for whatever reasons. So then 38, so the boys were nearly three, when Leo was born and conceived naturally, and but they're so I remember I was really, I was denied of lots of things when I was pregnant with twins, like, I don't know why when I went to Hypno birthing class, they just laughed, like you can't have twins and do Hypno birthing. When I when I was at the hospital, the consultant was like, 'ha ha' when I said I would like to take the birthing suite. Okay. So with Leo, I was like, I really want to do those things. And they said, Oh, hang on a minute. When you when you had your last pregnancy, Freddie was born with, so the diagnosis, he has been given his Poland syndrome, which is that wasn't just his right hand that was missing. He also has some muscular differences. So he was born without his right peck, without his bicep and only one of the tricep heads. So and lots of Poland syndrome doesn't affect the rest of your body. But you do have this absence of the right peck muscle. So anyway, he's had a muscle transfer surgery three months ago, which has all gone really well to move the lap to here. But because of this diagnosis that took ages to get and nobody at the hospital knew anything about this, and it was very unusual, I gather. So they said, Oh, well, you know, it's like you might have this again, I don't think you can go into the birthing centre. This is rubbish. It makes no impact on the birth. It's just a purely physical thing. If even this were to happen, there's no sort of other condition that would Yeah, that would impact the aftercare being in the birthing suite rather than the ward. So I had to get letters from Great Ormond Street. And so that was all sort of a fight.

Gemma Sherlock  29:11

So did that add a fear of the birth?

Jess Honeyball  29:14

Yeah. Well, and also it's, we had lots of tests and there's nothing genetic in Dan or I, It's just a developmental thing, like seven or eight weeks, the arm didn't develop. And, you know, there were these differences on his right side. But it's so random. It's sort of one in 20,000 live births, I think have a similar sort of developmental difference. Limb difference. So yeah, lots of letters saying this. I was likely to have this again as that person over there, you know, it's not sort of me related. But anyway, the decision to have another child other than wanting to go to baby cinema again, because frankly, that's enough reason to have another child.

Lauren Fenton  30:00

Oh that's why you should have another child!

Rina Teslica  30:02

Yeah? yeah -Okay, that's it, hey, I'm leaving and I'm going to go procreate!

Lauren Fenton  30:06

Also for anyone who doesn't know baby cinema is basically like they show films in the day that you can take your baby to, and just boobs out if you're breastfeeding . .

Jess Honeyball  30:18

Also you get a slice of cake with your ticket! and a cup of tea or coffee . .

Rina Teslica  30:23

I mean, which things are big, big things that I just never experienced! You know, why not have another child just to go to baby cinema?

Jess Honeyball  30:33

Exactly - I could only go with another person, because I had two f**king babies. Other than the fact I wanted to go to baby cinema, I mean, genuinely, that was probably 80% of the reason I had another child . .

Lauren Fenton  30:44

I might have another one for the same reason . .

Rina Teslica  30:46

OK let's do it together, be pregnant at the same time, so that we can go to the cinema together! (laughing)

Jess Honeyball  30:53

It was about having that experience. And I really I don't know if I even want to say this. I think somewhere buried in me was that I think I sort of wanted to know that I could have a typical baby.

Rina Teslica  31:07

oh - Amen! That's that's the big, big, big thing for me. Oh, 100%. Yeah. Because when you have a child with a disability it might, when she was born, my initial, immediate reaction was, what is wrong with me? Why did I Why did my body yeah, create this being has all these issues? And then it's always been back in my mind. Can I do it again? I've had a miscarriage. So then it's again, another thing of like, Oh, crap, it's me. It's me. So I do. Yeah, I need to prove to myself that I can have a healthy, typical child. And I feel like it would be kind of really relaxing to my mental health to just like, calm me down and think actually, no, you are fine. It's fine. It was just a thing that happened. So I totally understand what that what you were saying was that, it's crazy. . .

Jess Honeyball  31:12

yeah - It doesn't feel good to say. But yeah, to sort of think I can have a non disabled child and have that experience. And I think everybody feels that way who's gone through something similar, so you're not speaking,  like it's not new to our ears. I think we all feel that way. hmm, I don't know that it's been amazing for Freddie, I have to say, having another child. I mean, hopefully it will do in later life. But he, I do feel quite bad, because it all happened in such a short space of time.

Lauren Fenton  32:31

So just to clarify on that. So you had you had three boys under three? Yeah.

Jess Honeyball  32:36

Yeah

Rina Teslica  32:36

Oh my god - Can we give you a medal? Twins. Oh God.

Jess Honeyball  32:42

So I do feel like and whilst we were trying for Leo but we genuinely didn't think thought we'd do it naturally. And I do feel a bit guilty about the fact there's only two of us. And there's three of them and not really being able to give them as much as I'd like in terms of one on one time, and that Freddie's disabled and we, you know, we had this operation in Leeds this muscle transfer, and I was up there for a few days with him. And not with you know, Leo was only just one at that point, no 18 months. So there is a bit of me that in an ideal world I wouldn't have planned it this way,

Lauren Fenton  33:20

That's mum guilt though.

Jess Honeyball  33:21

Yeah, constantly. Yeah we all carry that mum guilt, please don't like find other ways of piling guilt onto yourself. It just my mother in law has a saying, which I'm sure she wouldn't mind me sharing that 'don't feel guilt. It's just a waste of energy'. Just don't feel it and try and just abandon it. We all feel it. And there's three of them and two of us, but then think about how many relationships you've created. Okay, if you have one child, that's a relationship - this is my maths bit. Between you and that child and your partner and that child. You have two children. There's an extra relationship. There's only one extra relationship but you have three children you created more than one extra relationship - that's amazing. Yeah, I mean, Freddie hates Leo (laughter). . . at the moment . .

Rina Teslica  34:11

he wouldn't mind you saying this?

Jess Honeyball  34:13

Not sure about that relationship.

Lauren Fenton  34:22

What about you Gemma - that decision to have a child?

Gemma Sherlock  34:25

I definitely don't think there was any part of me that wanted to do like having the baby bit again or like having a normal baby bit because I was just absolutely terrified. The pregnancy with Jasper was really great. Like it was I loved being pregnant, I loved to just mooching around and being pregnant and but the birth was really traumatic and then obviously afterwards was just you know, brutal. And so I didn't I think I was just terrified. To have of anything happen again, or even just going near a hospital again, because we're just in and out of hospital. So I think the decision was really more about Jasper having a sibling because I have a sister, our mum passed away. So our relationship is, you know, is crucial. I think I wouldn't feel anchored unless I had her. In my life, obviously, I've got amazing friends, but and our relationship hasn't always been straightforward. Like we we used to argue we're very different in many ways, but that fact that she is my sister will never go away will never change. And I think I really wanted that for Jasper. But I also was terrified that what how was he going to manage it, because his seizures at moment are quite good. Touchwood. But, you know, he, at that point in time, damn I shouldn't have said that, at that point in time, it was it was awful. Like we're in and out hospital, you know, we have two monitors all through the night, and he's having seizures in the night that you can't really see. So sleep is fraught, because if you drop to sleep, and he may have a seizure, you you haven't noticed, and he needs to get his medication quite quickly, otherwise, they didn't stop. So I wasn't sure how we were going to manage it. But I just felt like it's something we had to do. And I think Ro felt the same way at the same time. And it was also a financial decision. We did have lots of frozen embryos. So that also is like blows my mind that Spike my youngest and Jasper, honestly made, essentially because they were harvested and fertilised at the same time. And then they were in the freezer. So spike was just sitting in the freezer waiting to hear this. Yeah, so they're actually in a cellular level the same age - twins - which Yeah, yeah. But then we decided to go for it. And I think we said let's just try a couple of rounds. And I think we were both really of the mind that because it is brutal going through IVF. Like it's It's hardcore. It's, you know, they make you go through, essentially, the menopause. And then you're like pump drugs, and you're injecting every day. And it takes a long time, and you're spending money all the time they're trying to make you have the drugs. So we said, look, let's just see what happens in one or two rounds. And if it doesn't, then c'est la vie. We've got this amazing child and it didn't happen the first time and then we were on it. So like we got to try again. Then we tried again. And we got pregnant with Spike. And I can't tell you like he he's just a wonderful addition to our family like he's he's absolutely he's just a bundle of frenetic physical energy totally different from Jasper who's sweet kind of mild and Spike is, he just came out roaring, he's alpha to the core, and coping with him was difficult when when Jasper was little because obviously I wanted to be there for Jasper, Jasper had all these you know, he still, he was walking but he was still very wobbly, couldn't do stairs he still needs help with all his clothes still to this day needs a lot of extra help. And then we were in and up hospital. So I think I probably didn't give Spike enough full-on you know, I didn't really have that time of like glorious motherhood that you think you're going to have because actually it was like, Jasper Jasper Jasper, Spike Spike Spike and and then I was like, am I giving enough to Spike oh my god, he knows that I'm not, I'm focusing on Jasper and Jasper was really needy and that was all rocky it was rocky it was difficult. I'm not gonna say it's easy. But that's like that is families anyway and Spike's so full on like he was walking at nine months and he was climbing and just like all beating and  pushing and shoving so loud.

Rina Teslica  38:45

So he's like the typical second child basically . . ?

Gemma Sherlock  38:48

Yeah - on steroids!  Jasper would cover his ears and say mummy he's so loud and I don't know what to do with this child. But as time has gone on, what a therapy for Jasper, because he, Jasper never really crawled he he wasn't strong enough and eventually learned to walk so he missed developmental parts which you know, the neurologically those pathways just didn't form.  But Spike did all that really quickly and Jasper would copy him to this day he copies him so he's gone back and done those things over again. And Spike will climb a tree, Jasper was like oh my god, no, I couldn't climb a tree and then he's doing it. There's a Spike leads the way Jasper follows Jasper can't really initiate his own imaginative play, Spike does that naturally because that's what apparently that's what kids do, in a normal life. Who knew? And then well Jasper will join in and so now as they get was just moving into a phase where it's like, I can actually leave them for five minutes without it. You know, somebody's being thrown down the stairs Jasper being thrown down the stairs. It's it's definitely Spike, and they're playing together and they have their own dynamic which is sometimes feisty and sometimes upsetting. But mostly love. Aww so glad we did it you know. It's made our family. It's been really hard it's been really exhausting, but we feel like it's made our family stronger and richer. Yeah, yeah. So I would say do it, and about the fear of that first bit like, that's real, that's not gonna go like, I just had to take ownership of it. And I said, I'm having a caesarean. Nobody's gonna f**king stop me. I'm going on the NHS, I'm gonna have a caesarean. I need to take control of this. And they were like 'why' and I was, 'no, no, no, no, no, you're gonna give me a caesarean. And I want it'. I don't want to go at the same hospital. So I went down to like, what's it called Chelsea and Westminster which is very very nice, and I didn't want to be in the hospital that he was born in or all the hospitals that were in and out of all the time. So . .

Jess Honeyball  40:46

So you new your triggers - you were very strong about that. Yes determined . . very impressive.

Gemma Sherlock  40:50

Yes determined to do it differently.  Yes and on the day he was born, I was like, just a wreck like shaking could physically couldn't stop shaking. And I was just 'get him out. I don't want to know anything. I don't you could have just put me to sleep for three days. I didn't want to know any I don't want any of the birth thing or Hypno birthing or anything. I was like, get this baby out of me safely. And then I want to wake up in my own bed with a child that is healthy. And yeah, so I couldn't get out of there fast enough. And then I found myself in bed with the health visitor being like 'you alright love?' Me being - 'Gosh oh gosh this is so dreamy".

Rina Teslica  41:20

So so crazy, because I have the thing in my head. So Lua was born at St. Thomas's. And it's a lovely hospital. And like the birthing suites where you give birth, the windows are massive. I'll never forget and like you see parliament and Big Ben and it's beautiful and Lambeth, bridge, love, love, love. But like having given birth, and then like my dad and my mum came and gave like flowers because you know, you've just given birth even though the baby's f**king in ICU. But what Yeah, so I have this picture of like red roses, and the view of just like London, and it's beautiful. And I have a thing in my mind where I'm like, I want to go back there and redo it. Because it, it was wonderful. Otherwise, I want to do it the same way but just have a different outcome. That's like kind of thing my head and we spoke about it this morning, because I had a dream last night about hospitals. And I was like, you know, 'Arbs like, I think I want to if when we do have another baby eventually, I think I want to go back to St. Thomas's'. And he's like, 'F**k, no. No way. Am I walking through there' - Yeah, like even because we spent like several months then there was an AMT coffee shop, that we had lunch all the time. Every time every time I see an AMT, like randomly like there's one in Richmond underground station, I will take a picture. And I'm like, Look AMT, you'd like? and he's like f**k off? Don't show me it. I don't want to know I don't want to see it. I don't want to like just anything to do it a f**king massive trauma. So we're in like that mind. And I was like, Where would you give birth? He's I don't know, UCL or any other hospital just not that one. So we're in two minds.

Lauren Fenton  42:59

Well, if it happens when it happens? You're the one giving birth, so I think you get to veto that decision.

Rina Teslica  43:05

Exactly! But another thing I wanted to get into is, for example, like Lua will always need help, and she's never gonna leave my side. And selfishly, I want to give her a sibling that will be there when I'm not. Have you guys thought about this?

Gemma Sherlock  43:21

100%? Yeah, that's I think that was like the biggest shock for us when Jasper was doing so well. When he was little we couldn't believe I where he'd come from the moment he was born. They said his head, it's just black. We scanned him, it's just black. I was like this what does that mean, is he going to survive? And they're like, I'm sorry, I don't know. Like he'll He'll either make it the next five minutes, or he'll walk out of here in a year's time. And we were like, and he was doing so well. And then we went to see his neurosurgeon who I mean, the neurosurgeon is incredible, kudos to him, but they're not known for their bedside manners. And he was pushing for him to have epilepsy surgery where they disconnect half the brain. And it would mean he would definitely be wheelchair bound. And various other you know, there were there could be many risks, but they said potentially he would have like 50% chance of less seizures, which to me does sound a bit bonkers but that's by the by, by that point, he was like, You do realise that this kind of epilepsy, he's not going to be able to live an independent life. And you're, you know, we're potentially giving him the opportunity to do so it just hit me like a tonne of bricks because he was doing so well because he looked so great. It started to think yeah, how do you live independently if you can't be alone because you're having seizures.  Equally, that might change that? You don't know, but that got me thinking about all those things and it gives me the fear in the shower. You know, it's the fear and the nighttime like, what happens if something happens to me what happens? Can my sister look after them and I think I put a little bit of pressure on Jim and Georgia when they were little because they have such a great bond as siblings and equally is he's not their responsibility at all. And it's complex having a you know, a newborn baby from your dad with his new wife and you know, that's complex for them. I know that but I put a little bit of pressure on them like 'you love him as a brother', and they were like 'shit man - calm down a bit'  I Yeah, it was like who, who's here for him who's here him, and still now to Spike and like, he's your brother. He's gonna be your brother forever. I read them books about it. And I do feel that like, not, you know, Spike may not be able to look after him it's such a pressure, but at least it's another bond. It's another tie, it's another connection. So yeah.

Rina Teslica  45:44

I'm not alone. And it's great. It's a crazy, crazy way to think about it. And it's sometimes it feels so selfish. Like, I want another baby to be around when I'm dead. Like, it's so f**ked, but I feel like she needs she's also at that stage where like, children are so amazing to her. Like, she'll stop in the middle the street and like chase after kids, and they're a bit like 'what the hell is this? You know? What, and she's just obsessed. And I can sense now, which is why we're doing this podcast, that she's lonely. And she she needs to have that. Yeah. She's very sociable, very so engaging. Yeah, and like, adores children. So it's like, I now need to like suck it up, basically, and make that decision and give her something that will be so beneficial for her. So you've you've got you guys have all prompted me.

Gemma Sherlock  46:36

the fear is that, you know, it doesn't go to plan, anything can happen. Like it may not be anything like this happened to Lua it, you just you just don't know. It's gonna be a leap of faith, isn't it, you go into it with an open heart and hope that the outcome is what you want it to be.

Jess Honeyball  46:53

And possibly the pregnancy won't be the worry free time you have first time that you both said you have that lovely walking around. Yes, you're loving being pregnant, because you might have all those anxieties. I certainly did in terms of the digit scan and blah, blah, blah, but but there's every chance that then that newborn baby bit is just very different.

Gemma Sherlock  47:16

. . and also Lua's now that bit a little bit older. So you really are like on top of managing, well now she can manage her own trachy, now she just pulls that out, puts it back in, she can take care of herself. But she you're at she's at a point where you're a little bit more like in control of, of what you know about her? Oh, yeah, he's when they're really little. It's still like, what is this?

Rina Teslica  47:44

Oh my God yeah - for the first three years, You're like, what is this person? Like? How am I going to deal with you for the rest of your life?

Gemma Sherlock  47:51

Yeah well I think that's the same with a normal normal one, those you know, non disabled, non disabled. You know, as a mother, you get sent home with a living being and you have no idea what you're doing. So for us, it's just like, triple fold for you, like, even more so because there's so many things coming in. Yeah.

Rina Teslica  48:00

And it's nuts because she was in hospital for seven months. So really, like, I had the help like the nurses were doing everything I could just sit back and like Let them wash her. Let them change her nappy feed her do all the bits. Oh, I didn't really do

Gemma Sherlock  48:23

Oh really I did that - oh maybe that was once he was out of ICU.

Rina Teslica  48:25

Oh, no, I was quite, like with the trachy. So I was like, very frightened and a bit like, Oh my God. And then when we did get home when she was like, seven, eight months, I was just in total like shock because partners gone away. You're left at home alone with this child who is like attached to bits and whatever. And it is now fully your responsibility. I was like, Oh my God. I had carers in the night as well which I still do but like so I didn't have like the newborn baby staying up all night doing that three hourly feed nothing so I'm also petrified of how that's gonna be. Once I do - tough Yeah. And it's like Am I ready? (LF: You'll Love it) you think?

Gemma Sherlock  49:13

When I said I was like delirious with happiness, because like at the point where most people are like really stressed I always thought that it'll be fine. I'll Find a way

Lauren Fenton  49:23

I think I want to have a third. I mean, that whole thing you were talking about - you know Spike being there for Jasper we've talked about having a third and one of the things that comes into our decision rightly or wrongly and somewhat unfairly I think is: it's a lot on Olivia you know, she's already even though she's eight and Bea is six it feels like a lot larger age difference and she really does look after Bea and help her and she knows more about physio, OT & speech therapy than most adults.

Gemma Sherlock  49:58

She always knows what Bea is saying even when Bea was really little she would know what she was saying.

Lauren Fenton  50:03

Yeah they could communicate and even though Bea can't really communicate. Olivia understands and interprets for her which is sometimes been not so good because it's not encouraging Bea to try and find the articulation. But yeah, that is amazing. But yeah, sort of thing that is a lot on Olivia for the rest of her life. Absolutely. Like you're in the shower. I'm absolutely terrified I won't be there. It's like maybe we should make another human to help.

Gemma Sherlock  50:31

I have that with us too because Spike and Jasper share a room. So since he was little, he's, you know, being woken up in the night to find I'm calling an ambulance. And I'm like all on Jasper, Jasper is having a seizure and and we're like all Jasper and he's in the middle of this like trauma and the ambulance people come into the room and the lights are on and then they take us away. And he's had that over and over again. Since he's (been little) right. He doesn't know any different. So for him that's normal.

Lauren Fenton  50:57

On that how do you talk to Spike about Jasper? And similarly, Jess, do you talk to Freddie's siblings about having a sibling with a disability?

Gemma Sherlock  51:09

Well, Jasper seizures are so subtle that I am constantly asking him 'Are you okay? Are you having seizure?' And so that is just a language that is around Spike from day dot.  So he will ask Jasper 'are you okay? Are you having a seizure?' Even though Yeah, and now they're getting a little bit older and Jasper's seizures are (god I keep saying things (poss jinx)) been quite good for a few weeks. His independence is growing a little bit. So for example, they'll play upstairs on their own, I might go downstairs which I would never have done before. And I know that Spike is with him. . .

Rina Teslica  51:43

So he already has the responsibility? . . Love it always looking at the positives!!

Gemma Sherlock  51:45

He already has it, which maybe isn't fair, but c'est la vie. So Spike says to him, 'are you okay? Jasper' - and Jasper is meant to say to him I'm having a seizure and Spike's meant to come and run and tell me which I think he would and he has been in a scenario where we're driving to Cornwall and in the back of the car Jasper has had a long seizure we've had to pull over on the motorway and the police have come the ambulance have come and we're trying to deal with that seizure and Spike is just sat in his seat like an absolute sweetheart and this is a child who cannot sit still. He understands the gravity and the seriousness of it. And that's you know, that's that's okay, that's all right. And so we talk about it all the time. He doesn't really, Jasper doesn't really have a scooby do what epilepsy is or what it means but occasionally he'll ask me a question - he asked me the other day 'what is cerebral palsy?' and then we had a really nice conversation about it and then the end he was like 'So does that mean 'I can go in a mini bus?' (laughing)  I hadn't got a clue what he was talking about, then he was like - "On Mr tumble - the kid in a wheelchair goes on a mini bus I'd really like to do that". I was like oh okay, so you've got no interest in cerebral palsy 'we could go on a mini bus not just becuase of cerebral palsy'

Lauren Fenton  52:58

Just love that with children . .

Gemma Sherlock  53:02

Yeah - All our worry about 'oh god are we f**king them up – f**king them up? course we're f**king them up - that's our job as parents!

Jess Honeyball  53:09

Yes - just rent a mini bus. Yes we could put them all in a mini bus I like that.  So what about you Jess? So when when the twins were learning to walk, Dylan started walking at about 11-12 months and then Freddie didn't walk until about 16-17 months. And he, I mean as well as every attempt being accompanied by this like raucous laugher, he's got this real like Sir James chuckle - hilarious - so that we'd be at soft play and people were like 'you've got to get this kid on YouTube'. It's really - ha ha ha - hilarious, really filthy. So but you know, he was pretty wobbly. And he I mean at one point I think we're in a&e three times in a week with - because he would just - if there was one sharp corner in a room he would find it with his head and you know get a major egg because particularly, you know, if he fell to the right side he couldn't break his fall, or and I think in some way he wanted to avoid putting weight on his right arm because he doesn't have the flex in his elbow. So I think that would damage his arm. So now he's kind of learned to tumble in the right way. But I never forget the first time you know, he was sort of cruising around the car as I was getting Dylan in and it was a real kind of mum fail, I should have had him bah - I don't know, somewhere else, in the buggy or whatever. And he kind of went round and went off the curb and just went 'clunk' and I just howled and yelled like because I just saw this enormous like bubbly, uh you know - yeah, like egg you know bowl of eggs and it was just horrendous. And by the end it happens so much, you know, I just kind of knew what the right things to look for where and I don't think we need to go to A&E, I mean generally if it pops out it's a good thing. And if they scream, then they stop. You know, they react. Anyway. So that happened for so long. Like on and off the first three years, it was so difficult and I, the stuff I'm anticipating being difficult is the psychological, the kind of realisation that he's very different, which is sort of happening now, especially with the surgery, but particularly at seven when there's that sort of consciousness about how you appear to your peers, and how you are different. And so that's sort of what I was anticipating being difficult. But all this early stuff was like, not what I was expecting at all. It wasn't expecting the physical, the hurt and the injury. So I was worried that that sort of the impact on Dylan, because I had a terrible reaction, I sort of, can't, I need to contain it better, and probably do now. But early on, I just be like, oh, you know, appalled because it looked so bad. And I was so worried that I was loading that onto Dylan. And in a way he was quite risk averse for the beginning of life in playgrounds and stuff. And I'm sure that's because he saw Freddie just tumble and give himself black eyes and noses and faces. So we, we've talked about that a bit. We talked about his muscle surgery that had muscle transfer surgery that happened four months ago. And Freddie calls his smaller arm he calls it his baby arm, which is just, you know. Leo has started saying 'my baby arm my baby arm'. We're like, Leo, you didn't have a baby arm. You've got two arms. He's like no, no baby arm and quite a lot of Freddie's friends say they have a baby arm as well. So we Yeah,

Lauren Fenton  56:48

I think that's a really interesting actually, um, who knows, you're probably more of a psychologist than me and understanding things. But that feels like actually, there's something in Freddie that people want to emulate . .

Rina Teslica  57:00

. . it's a positive thing . .

Lauren Fenton  57:02

that they see him saying something they want to see it say it and habit to that. I think that's, that's really interesting.

Jess Honeyball  57:08

Yeah. Well, particularly at this age, I think, I think I think that'll probably change. But so we talked to Freddie very much about his story. He's a bit reticent to talk about it, actually.

Gemma Sherlock  57:19

hmm So's Jasper . . won't have anything to do with it

Lauren Fenton  57:23

. . they're so little,

Jess Honeyball  57:24

but it's interesting at this age of kind of consciousness about their bodies, and that there is a reticence.

Gemma Sherlock  57:29

But they're both very sunny, positive people.  I don't know if this is at play, but I from my instinct is Jasper is just like, I don't want to talk about that it's negative. That's it he doesn't want it. If he goes into hospital, on his birthday once, he had to go in by ambulance in the middle of his birthday party. And then the next day at school, everyone was like, how was your birthday? And he's like, yeah, it was great. That's it.

Lauren Fenton  57:33

I think that's very typical of a child, actually. Because they don't want that difference. And they don't want it. I mean, I found that even with Olivia, sometimes she would be overly positive and optimistic. I mean, she's a little older. Now. She's like eight, Yeah, she's just took Bea as being Bea. But certainly in the last couple of years, and particularly in the last year, we have had so many conversations about why it is that Bea has this or why, even to the point of talking about genes and stuff.

Gemma Sherlock  58:12

And has she instigated those conversations?

Lauren Fenton  58:25

Well, partly because we've been reading quite a lot of books. And it's been sometimes instigated by her because she has to, she's surrounded by eight and nine year olds, and they have questions and they have a certain level of maturity where they talk about these things. So she needs explanations for her friends at school or when they come over to our house. But then also we've been reading books and looking at lots of things like together that I think have prompted her to ask questions like this Sinead Burke book, we were talking about this earlier before we were recording. Brilliant book - Sinead Burke - it's wonderful. It's all, it's a children's book about being different and being you and it's just lots of life affirming tips and support for for anybody regardless of who they are. People who don't know Sinead Burke so, little person and the advocate for disability rights and she's also been a teacher and she has an amazing TED talk that's worth listening to but she she just puts things so eloquently about why people noticing differences is okay and how actually we should talk about it but the you just need to be you and if people have a problem with that, that's their problem. And yeah, Olivia loves that book and it's prompted her to be very, and I always remember she was, I think in year two, she had to do a project at school where they were designing, designing like a city or something. And she very proudly told me when she came home that she had, how she designed it. And then that she'd made sure that there was a lot of disabled parking in the car park to design the whole car park. And of course no other Seven year old or six year old had thought about that . . .

Gemma Sherlock  1:00:14

. . . it would never come into their consciousness, would it? of course while you're driving around trying to find somewhere to park

Lauren Fenton  1:00:18

. . so yeah, I think she can educate them and talk about these things with her friends at school and class, yes, that's fantastic.

Jess Honeyball  1:00:27

And do you think you'd have she would have been ready to talk about difference any earlier than now? Because I think there's there is an age,

Lauren Fenton  1:00:35

I think it's been, we've always been really honest about Bea has all these extra challenges. And you know, it's been kind of obvious because Bea's been in hospital for surgeries. And when she was little, Olivia would say things like, 'Why can't Bea go to my school? or Bea can't talk yet but she will talk?' and I would just be like, 'well, you know, she'll, she'll Bea will do what's right for Bea in Bea time', you know, trying to not give her kind of this expectation that Bea was going to do something but just a little bit later. And then now, yeah, she's now she's ready for a fuller conversation. And I think to your point about the minibus, so it was a bit like that with Olivia, like, you would try and say, oh, okay, let me tell you about Bea and the fact that she has this challenge. And then she just be like, no, like, what I just want to know what colour glasses she's gonna get next, you know, something trivial. But that's how kids think.

Gemma Sherlock  1:01:36

I find with Spike, he will say something like, 'I'm wobbly too Mummy', or 'I've had a seizure'. Because he's desperate. You know, there's so much attention going on with the other child or he'll like push Jasper out of the way, and I'm like, 'you can't do that'. Just try and remember he's wobbly and then he'll come out later on like 'mummy I'm feeling a bit wobbly, I've just had a seizure'.

Jess Honeyball  1:01:59

Hmm Yeah Dylan, he'll sort of put his hand in his sleeve and say, Mummy, look, I don't have a hand either. There was quite a lot of that, at like three. Because, he didn't get so much more attention Freddie, but just by the nature of it . .

Gemma Sherlock  1:02:16

. .  maybe help dressing and things like that.

Jess Honeyball  1:02:18

Oh my god, I love that thought - how amazing. Yeah, we offer different prosthetics and he never wants to use them. But yeah, it's a little bit more attention on Freddie, I guess. But we haven't really had - we talked to them both really - about how he - about Freddie's story and how he just how he grew inside me and his arm just didn't grow and that's how he was made inside my tummy but every now and again. Dylan will ask things like 'are his fingers inside his arm?' Yeah I wonder if it comes because they've just started school. Yeah, and other kids are asking them kind of what you're saying about Olivia to about sort of explanations for their friends. And I think it's a bit there's a bit of it, that comes down to that

Gemma Sherlock  1:03:03

Starting to see something, see his brother through other people's eyes rather than . .

Jess Honeyball  1:03:08

. . Has it always just been, just the way it is. Yeah.

Rina Teslica  1:03:11

This leads quite nicely into like, how you parent between them. So obviously like how your parent Spike and how that changes and how that kind of goes around with Jasper's disability and whether one will get away with more or less. Because I was thinking about this with my parents, obviously, their parenting style was the same between my brother and I. But our personalities are different. So like I was the big rebel, even though their parenting was the same, the way that we reacted to both the parenting style it was just different. He was a lot more docile while I would rebel massively and . .

Jess Honeyball  1:03:46

Where you the younger?

Rina Teslica  1:03:47

I'm the older. yeah. Which is crazy. Right? And it's interesting that when you put a disability in the mix, and then how that will change how you parent siblings, so yeah, - Gemma, What do you think?

Gemma Sherlock  1:04:03

I don't know.

Lauren Fenton  1:04:08

I think it's a real challenge for all parents anyway because all children are different and they will need different things at different times. And you try and be fair and you try and be consistent. But depending on your mood depending on the circumstances you can find yourself not being there.

Gemma Sherlock  1:04:24

. . and there's just so much like guilt because already Jasper takes so much more has, you know, since he was little and then he's really really placid and will do what you tell him to do and will sit at the table and eat because that's part of his condition partly because he's really medicated partly just his personality like your brother. And spike is the total opposite although obviously he's just a kid like that's all normal stuff but so he's always got the like, the harder side of me. And I had I kind of made a conscious decision. And actually Jess and I talked about this because we were both struggling with like, our two most rebellious children, which was Spike and Dylan. And I just had to say to myself, like, he is just a tiny human being, like, he's not doing any of this. He doesn't know anything he's doing nothing is he's doing it intentionally. And I was finding myself getting really cross and angry and like irritated in the moment, he was taking the brunt of that. And I just had to kind of tell myself, like, every time you feel that way, just remind yourself that he's just a tiny little human being and come to him with kindness. So when he was being mental, I'd be like, come to him with kindness . . .come to him with kindness.

Jess Honeyball  1:05:46

Repeat that mantra! It's a tiny person, it's a tiny person . .

Gemma Sherlock  1:05:50

It's been reciprocal. So the more that I meet him at his level and come to me with kindness and like, try to narrate what's happening rather than just like shout and shit all over them. I can see that this is typical. Gentle parenting, even though it doesn't quite often just snap into like, That's IT!! and Jasper said to me, other day like 'mummy, I tell you all the time, I love you because I'm so frightened you're gonna get angry' and I'm like 'oh no - but I'm not angry, am I angry, but I thought you love me, you tell me you love me all the time?' Because of what?? What did you say!!??' it was suddenly aware that like, he's, he's the one that's constantly, like who it's just Spike, it's okay, it's okay. It's okay. Yeah placating because I'm like, Oh, God, I can't deal with this, why have you thrown that down the stairs today? Or whatever it is, you know? So yeah, I have to consciously make an effort to parent differently than my natural instinct would be. Yeah.

Jess Honeyball  1:06:55

It tends to be the same. I have to say maybe. Although, you know that bit in the Crown, where the Queen and Phillip say 'who's your favourite? Who's your favourite?' So at the beginning, I was like, you know Dan and I would be like, "who's your favourite?!" Appalling I know. He's like "I think Dylan and I are similar", and I was like, 'yeah, you are and yeah . .  and probably Freddie's my favourite'. I mean, like, with a pinch of salt, as parents only joking, but obviously not. And Freddie was just, he just loved the joy in life, but was obviously a little bit more vulnerable. So if Dylan was, you know, quite often Freddie, doesn't want to roll his sleeves back. So we'll just be hanging. Dylan still now really irritates me he pulls him by the sleeve and kind of kind of pull him around. He's less stable. But you know, he's got good stability. And he's got an amazing core, because it all comes from here. So he's just got this muscular centre. But you know, he's obviously going to wobble. And so I come down quite hard on Dylan for things like that, that are kind of specific. But generally, I think I'm pretty much the same. But I wonder if with a physical disability, it is a bit different. Because the cognitive needs are the same really . .

Rina Teslica  1:08:38

so they understand the barriers

Jess Honeyball  1:08:40

Yeah - so actually, that remains kind of similar. And the same with Leo.

Lauren Fenton  1:08:45

I think that's yeah, that's the challenge. I think with Bea, well, twofold, I guess it's communication and kind of related to that behaviour. So when Bea doesn't understand something, or won't do something, or has a complete f**king meltdown, you know, when we need to get out of the house or something like that. Sometimes Olivia finds that hard. But of course, we all find that hard, but I don't react with anger and disciplining Bea in the same way that if Olivia had had a hissy fit about something I would, because she's reacting like that and behaving like that for a different reason. And maybe fundamentally, it's the same reason but I can actually talk it through with Olivia and rationalise it in a way that I can't at times with Bea. So she's very accommodating with that, and I'm very aware of it, but it's it is hard. And it's hard to distinguish between when it is something where Bea's crossed a red line, and she knows she's crossing a red line and she's literally just misbehaving and acting up in a way that is I need to clamp down on and we need to put her from green to amber to red on the chart or whatever - versus something where it's a genuine frustration that she can't communicate a need or want to or something. So, I find that balance really hard to strike at times. And I know that I don't always get it right. But I also, I'm quite honest with Olivia about that now I can be I can sort of, she'll say, 'Hey, Bea pushed me and you know, you didn't you didn't shout at Bea being, you shouted at me. You shouted at me for that before and you didn't shout a Bea'. She calls me out on it when I do it, which is good and bad. You know, we have a lot of conversations around. Actually, you're right, that doesn't seem fair. I can see why you'd be frustrated by that. Let me explain to you why I did that in that moment. And you know what, okay, I don't always come to it with such clarity and good explanation. Sometimes it is. 'You're right, sorry. Bea don't do that again, you know, whatever, whatever it might be. So it's really hard. And I just don't want her to ever feel resentment. But she will she will feel resentment in moments and she probably feels resentment in moments now. It's, it's, it's really tricky balance to tread.

Gemma Sherlock  1:11:03

. . and Spike's, really, he's, he's quite sort of like emotionally switched on. And he is now saying to me things like, I'm hurting too, or you didn't ask me or like, I'll say 'Jasper you okay, Jasper you okay?' and Spike's like 'I'm okay' Spikey. So now I'm consciously making an effort in the morning when they're putting their shoes on normally, like, get your shoes on Spike, and Jasper you know the processing of like, let alone physically doing it with one left hand that doesn't really do anything. And then physically trying to work out how to do that for him - it just takes a very long time. So I've learned so much patience with him, like we give all the time that he needs and Spike gets there's nothing. So now that Spike is able to sometimes put me back, you know, remind me I'm trying to be trying to give it the same amount of time because God How does that feel as a kid when the other one is getting so much calmness? And then he's getting my crazy mother, it is difficult.

Lauren Fenton  1:11:59

Do you think that Spike has more empathy because of his relationship? I mean, it's really impossible to say, isn't it?

Gemma Sherlock  1:12:04

I didn't, but obviously, what I see at home is them butting heads, but I just got a report from his nursery. And it was just, it was just so sweet. 'And spike is the sweetest child. He's so kind. He's so he's got so many friends. He's so empathetic, he looks after all the kids in the class, he always asks is everyone okay?' . . .

Rina Teslica  1:12:22

Wonder where he got that from? . .

Gemma Sherlock  1:12:26

Yes and he's really . . and this little girl came up to me and said 'it was Spikey who looked after me when I was crying' - She probably had a Teddy - so yes, he does that - I don't always see that. But yeah, he does.

Lauren Fenton  1:12:37

That's wonderful. So now we've reached that time in the podcast that we want to ask you guys for #awkward. And that was awkward in itself.

Rina Teslica  1:12:59

I mean it is #awkward we got to make it a bit awkward.

Lauren Fenton  1:13:01

so just to remind what that is. We ask all our guests and we also share some ourselves for our #awkward moment. Basically, it's that unsolicited but often well meaning advice that you get or comment that you get from either a friend or family member or stranger in the street. Lovely stranger that comes up to you in the street. So Jess, have you got #awkward that you'd like to share with us?

Jess Honeyball  1:13:29

Yeah, God - how did you bite your tongue? Did you literally Bite your tongue? Yes. Unfortunately, a family member when the twins were first born, well, they were probably about four or five months old. And we took them to my husband's grandfather, who was 99 at the time. So he did meet them, which was lovely, but he did study Freddie for some time, disapprovingly. And it's like, oh, and looked at Dylan his twin and 'Oh but that one, this one's perfect' and sort of put Freddie down and which was really difficult. Yeah, no, really did, eyes watering . .

Gemma Sherlock  1:14:21

Did you have to forgive him because of his age?

Jess Honeyball  1:14:24

Well, pah - and you know, and I spoke to Dan's mom about it. And, you know, it is a generational thing. Sure. And we're lucky that actually, in terms of disabled disability being visible, it's it's we're probably a generation that has been exposed to it even though we're saying not enough. Yeah. But more so than them more so than them. And so I think as you say you can forgive the ignorance, you can understand it, but it's pretty hard to hear somebody else say that your baby's not perfect. Yeah, yeah.

Lauren Fenton  1:14:59

Oh, Gemma, anything you want to share? I feel like this is a confessional. It's other people's confessions. Really isn't it?

Gemma Sherlock  1:15:09

I think. I think because Jasper's disability is not particularly obvious. We haven't had that many scenarios I used to find it really grating at the swings for some reason, like passive aggressive mothers. Quite frequently it's happened more than once we've had it who tell their own children like how that boy's too big for that swing, because it's the baby swing. And when Jasper was just having the time of his life like in the baby swing - because he was he's wobbly on one side like he is he's it affects his whole left side. So sitting on a big boys swing and holding on with two hands he's just mastered and he's over the moon. But he loves to go in the swings now wonderful for me that I can actually plunk him in there and swing him but then you'd get some others making a comment about it and I just thought, Who does that benefit and what are they even getting out of that. Other than, are they, it must come from a place of competition essentially, like my kid by that age is going to be able to use a big swing . .

Jess Honeyball  1:16:11

And they're not just speaking to you. It's like a way of you hearing but sort of really . .

Rina Teslica  1:16:16

. . .so passive aggressive, aggressive.

Lauren Fenton  1:16:19

And what about the children, their children that are hearing that? . .

Gemma Sherlock  1:16:22

. . then they start commenting 'he's really big to be in the swing!' Because you've just said it. I mean, it's bizarre. And I tried to let it go over your my head, but you know, it does seem awful. But that's it.

Lauren Fenton  1:16:33

Yeah. I mean, I guess with Bea she's really young looking. So she wouldn't get that sort of comment. But she'd been getting babied a lot. So and she still does. We went to a Halloween party this year. And she was uh, one of the parents that I didn't know I think she was a bit weird to be honest. And she was just all over Bea like couchee couchee coo, kind of cheeks and all this kind of stuff. And she I know she meant it well, but she was like, she wants to give me a kiss and cuddle her and was like treating her like a sort of six month old. - infant child - Yeah, completely. And she gets in the playground as well. I know she does all the year six girls know her because they want to come and baby her.  And that's hard to stomach sometimes. But it's just what can you do other than teach her to not like to stand up for yourself and be like I'm here I'm Bea How old are you Bea? 'iX - she'll say, and just Yeah, I think it's people's perceptions is a real hard one.  I know you get that with Lua sometimes as well. Don't you cause she's so . . . . . she's little as well. I've had a funny one in a playground. Actually. I just remembered like Lua's tiny like she's six nearly but she looks maybe two ish. So I was on like, I don't know if it was the swing it was awhile ago. And anyway, she was on some sort of apparatus in a playground. And this little girl, little she was maybe 10 ran over and was like, 'why is your baby so fat?'

Gemma Sherlock  1:18:15

My god, where does that come from?

Rina Teslica  1:18:18

I know . . her parents were like, the guy was like dressed in a suit and the mother very well dressed and like in Primrose Hills. And they must have immediately knew like, oh, shit, our daughter's gonna do something they ran up to like, 'what did she ask? - I'm so sorry.' And I was like, no, no, she was just asking why my baby's fat. Because they worried - well Lua is obviously disabled. Like she, you know, she looks different to other children. So I think they assumed that their daughter had said something horrible. And were very embarrassed. I was like, 'no, no, it's just why she's fat'. And then I turned to the girl and said 'She's fat because she eats a lot. And she likes all the yummy food, which I'm sure you do, too'. She's like, 'Yeah', and then like ran off, and her parents were just mortified. mortified. Yeah. So that's . .

Gemma Sherlock  1:19:04

how did you feel? Did you feel . .

Rina Teslica  1:19:06

I burst out laughing? I just thought it was hilarious. Like, of all the things that you could ask. It was that and it's just that naivity from a child, like, what's the thing that they noticed? chubbiness and double chins' . .

Jess Honeyball  1:19:18

. . name drop name drop . . I find that quite refreshing from kids because often, you know, it feels like people are noticing something and no one's saying it, whereas kids will just give you that face value response 'where's his hand? . Whereas, you know, you can see that some parents are just sort of desperately trying to scramble around in their head for something to say that's not related to their disability, because they don't want to offend and it's well meant, but it's f**king irritating. I just want to probably feel different now. But certainly when they were babies, I was like, why are you asking me? Why this is sort of a weird sick thing. But . . other than Geri Halliwell . . of course who just came straight out, it was at a baby group that we were at. You know when you see someone looking so glossy and gorgeous and you think 'I know you, like did I go to school with you sort of know someone and then I was like, oh my god, it's Geri Halliwell with her baby who was a similar age to Freddie and Dylan. And Geri and Freddie had a real connection during class, and she came up afterwards and was like 'where is his hand?' I said 'oh well that's just the way he was born. And in where I was, then I was like, Thank f**k, somebody's just come out and ask me rather than going, 'oh his smile's amazing. he's got gorgeous eyes'. Yeah. But she was lovely, really nice. And we had like a 10-15 minute chat at the end of the class where she was sharing stories. She'd just been on a yacht with this - The captain had one hand and he'd just was basically managing this incredible 20 foot yacht. That, you know, she was just very encouraging. And just said, you know, he's the biggest presence in this room about Freddie and how amazing - yeah it was just lovely, a nice encounter.

Gemma Sherlock  1:21:14

Like that's from somebody who obviously is used to talking to people in the public eye, but also you must, she must feel looked at. You know, people are doing the same thing to her especially with history. 'there's Geri Halliwell Don't look at her. Don't talk to her. Talk about her vibe. so how refreshing that she actually came to the point, and said what she wanted to say, Yeah,

Jess Honeyball  1:21:34

I'm disappointed you know she didn't give me her number . . so we could go on some sort of play date with Monty - still waiting. Was the first thing Dan said - did you get her number, if i'd started following her - be a bit creepy.

Lauren Fenton  1:21:54

So I think we've run out of time, unfortunately, today, thank you so much.

Jess Honeyball  1:21:59

Thanks for having us. It's been brilliant

Gemma Sherlock  1:22:01

Yes it's been so refreshing to talk about everything

Rina Teslica  1:22:04

Yeah,  And you've given me, definitely, food for thought. So thank you very much for that.

Gemma Sherlock  1:22:08

You'll have to let us know if and when it happens,

Rina Teslica  1:22:10

. . it will be because of you two . . Thanks guys

Jess Honeyball  1:22:19

. . pleasure anytime,

Rina Teslica  1:22:20

. . anyway we can chat now.  Done - woo hoo!

Lauren Fenton  1:22:38

Thank you so much for listening to the f**king normal podcast. We love making this podcast.

Rina Teslica  1:22:44

Yes, we do. ha ha . .

Lauren Fenton  1:22:46

We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:22:59

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at f**king normal podcast.com That's fkingnormalpodcast.com you can join us on Facebook and on Instagram at fking normal _podcast. That's fkingnormal_podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:23:23

So thanks so much for listening all the way to the end. We'll see you next time.

~Music continues “wake me up, loud as clouds, all my love for you”

Episode 1: Loneliness

~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 00:17

This is the F**king Normal Podcast. The cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica 00:24

I’m Rina

Lauren Fenton 00:25

and I’m Lauren

Rina Teslica 00:25

and we’re both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you – you are not alone! We are here to share unique parenting stories and chat about the things that we’ve learnt and are still learning.

Lauren Fenton 00:40

Prepare to sometimes laugh, sometimes cry but hopefully leave with a shot of optimism in your arm! And don’t forget we are talking from a parents’ perspective. We would never presume to talk on behalf of a disabled child or adult. Expect bad language and quite frankly some brutal honesty.

Rina Teslica 01:00

Because really what the f**k is normal anyway?!

~music - “wake me up loud as clouds, all my love for you”

Rina Teslica  01:16

…and welcome to our first episode on loneliness.

Lauren Fenton  01:19

I'm just laughing at my intro now, anyway, i don't want i won't derail you go Rina go Rina.

Rina Teslica  01:26

So, loneliness. It's such a specific theme. And I think it's one that resonates with a lot of people, not just parents of special needs children. We started sort of a WhatsApp group because we were all mums in North London with kids with special needs. And for me, that was the most liberating part of my journey of being a mother of a child with special needs. Because it was finally the place where I found people who understood me, understood my life, understood what I had gone through, understood where I could potentially go with what hand I was dealt with in life. Erm, my daughter is Lua, she's five and a half. And she was born with Noonan syndrome. I was 25 when I had, 25-26, when I had Lua, and she came into my life like a meteorite, she completely shattered my illusion of life I had always lived sort of quite precariously and hadn't really thought about or taken life seriously at all up until when I gave birth to her. So, I was totally overwhelmed with having a child with special needs. And it wasn't until I found these amazing women on that Whatsapp group that everything sort of calmed down and I sort of found my people and I know it sounds so silly to say, but it was just a comfort to know that I had this group of women that I could turn to, to just ask a question or rant about a crappy shitty day that I had had or needed a reference for a really good OT or a really good speech and language therapist or whatever. So, I'm so f**king grateful that I found this amazing group of women. Yeah, that's my story.

Lauren Fenton  03:06

That's lovely - lovely- God, listen to me. No, I'm glad to be one of your people. So, I'm Lauren. I'm from Newcastle. I live in North London like Rina with my two beautiful girlies Olivia and Bea oh, and my husband and my son forget about him. He's there too. And so, Olivia is nearly eight and Bea is six. And Bea has a lot going on. She has 18q partial deletion syndrome, which has a load of diagnosis alongside it. Specifically, she's got a hearing loss and some learning difficulties. And she's bloody amazing. As is, as is my other daughter who's neurotypical. God I hate that phrase, but they're both amazing but like Rina, I was not at all prepared for the kind of Disabled Parenting journey. So yeah, that's for us here and the topic is loneliness. And I am so delighted that Genevieve a mutual friend of us also in that famed Whatsapp group has agreed to be our first guest. She's a single mum, amazing single mum to five year old Dylan who has muscular dystrophy, and really, really happy she's agreed to be on the podcast. Hello, Gen.

Genevieve Porritt  04:18

Thank you for having me. I just Yeah, first one is just to say, you know, I'm really, really happy that the vibe I give off is something that made you think that I should be the one to talk about loneliness.

Lauren Fenton  04:32

You’re just exuding that lonely vibe.

Genevieve Porritt  04:34

Yeah thanks -

Lauren Fenton  04:35

You’re very welcome.

Genevieve Porritt  04:37

Oh dear Yeah, just to second what you guys have said about this amazing group and how wonderful and empowering and encouraging the WhatsApp group has been for me. And yeah, just having a bunch of people that just get it has been amazing. And I think it's a really awesome thing that we can do this podcast and reach out to people who may be in similar situations that we've been in and felt really lonely. Yeah, it’s the dream. Yeah, ultimately,

Lauren Fenton  05:13

We're saying we know you're not alone. Exactly we're here and we get we get some of this.

Genevieve Porritt  05:19

Yes. If we don't get it, we can kind of work out how it was, more than other people might be able to.

Lauren Fenton  05:26

So, tell us about yourself Gen. Give us a bit of background on Genevieve.

Genevieve Porritt  05:30

I grew up in Hampstead, North London with my parents and my younger sister and kind of you know, had a whole other life working in Fashion buying. Loved my career, but kind of Yeah, I, I believe very kind of matter of factly. I was here to be a mum, always did, like, always knew that was going to be my purpose. So, my career was great. But you know, it didn't give me purpose or passion. And I had Dylan in 2016 when I was 31. And he's my world. And the moment he was born, I knew what my purpose in life was. Yeah, he's awesome. He's my best friend, he's a dude.

Lauren Fenton  06:26

How was that first year of being a mum then, tell us a bit about your experience of motherhood?

Genevieve Porritt  06:34

Yeah, of course, Dylan was, like I said, born in 2016. Born with some challenges, mostly physical things. So, he spent five days in special care in hospital. And it was noted then that he had some physical challenges, scoliosis and some other things.

Rina Teslica  06:58

Did you know, through pregnancy, or was it just an absolute shock? Once he was born?

Genevieve Porritt  07:02

It was an absolute shock. We didn't know I'd actually had a scheduled home birth so we were at home for three days.

Rina Teslica  07:12

Oh wow

Genevieve Porritt  07:13

Trying to get him out and ended up in hospital with an emergency C section. He just couldn't, he just wasn't structurally able to get out. And then we kind of, learnt everything. With Dylan, I learnt everything bit by bit, which for me, looking back, I think was probably a great thing. Yeah. It made it kind of manageable, bite sized chunks to deal with

Lauren Fenton  07:39

Processing one thing at a time.

Genevieve Porritt  07:41

Exactly. Yeah. I suppose in a way, I'm grateful for that. And yeah, I think the first year was really tough. Looking back, it was all a blur, because as all first time mums are completely sleep deprived, trying to, you know, keep a small human alive, and feeding and sleep and keep yourself going and all the rest of it. So, it's very much a blur. I kept myself very busy. We had hospital appointments, but I also went to every single class that you could to try to keep myself sociable and just kept myself really busy. And I think looking back, that was obviously very much of a trauma response and trying to keep in control of everything and pushing myself to the limit of being able to do everything keeping me busy schedule on a day to day basis.

Lauren Fenton  08:40

Yeah, completely. That resonates. I was exactly the same. It was - I'm gonna get a massive file. I'm going to open up a section per diagnosis. Oh, we just found out she's deaf. I'll open a hearing section. Yeah, organise the shit out of it. That was definitely my response. I get you. Yeah,

Rina Teslica  09:01

I had the complete opposite response. We were in hospital for seven months. So, I had to leave her at 8pm every day and then go home alone and be in the house by myself with obviously my partner and we would watch TV and do those things. And I just block. And every day that we went in, it would be something else that was wrong with Lua or some other thing. Or they would call us in the middle of the night and say, Oh, she was really upset. So, we had to sedate her in order for her to be asleep. You know, all of the crap. So, the only thing I could control was how I looked and it sounds so f**king superficial. And I'm not a superficial person at all. But I felt that if my hair was washed and straightened and I had clothes on, and a bit of makeup and mascara, I was fine. Nothing could penetrate my hard exterior of you know, looking like I had my shit together when actually my world was falling completely apart. So then once I did have her home, I refused to socialise with anyone. I didn't give a crap about seeing absolutely anyone. I didn't want to go to the special needs groups and I didn't want to do this and that. Oh, f**k that shit. I was going to be at home and enjoy my baby that I'd waited several months to hold in my house. So, f**k you all. I'm not leaving the house. I'm not doing absolutely anything. So, I was such a hermit for the first year.

Genevieve Porritt  10:23

I think yeah, but I think I can resonate with it in that kind of showing that you were like, I'm okay, everything's fine. We can deal with this. Now everything's fine, but the way I did it was to go out and be like, I can do everything. I can cope with everything. Look what he can do and look what I can do. And yeah, just trying to do everything and pushed us to the limit. And I was so terrified of failing, myself failing him, make it, making it look like I wasn't coping, really terrified at that and really terrified of being judged as well. So, we, the hospital appointments, all of the things that we learned Dylan had a dislocated hip hypertonia. So, it was all very much physio and bracing and all these kind of things. So, I just go to a hospital appointment, have a physio appointment, they tell me what to do, I'd go home and do it. And it was each day, go home, do it go home, don't go home, do it. And I lived very much in a, what I later realised was a kind of denial phase of just taking each day and just doing it and not thinking about the future or full diagnosis.

Lauren Fenton  11:40

It’s a crazy amount of pressure to put on yourself as well. And can feel even though you're very busy. I don't know, I can't speak for you. But for me, i'd had a very similar response. And even though i was incredibly busy, you can feel very isolated and very lonely in those situations. I mean, I remember going to a class with Bea every Wednesday and crying on a Wednesday evening, every Wednesday and Patrick being like, What the f**k are you doing? Why are you going to a class that makes you cry? It's like, I've got to do it. I've got to keep going. I've got I've got to give her every possible opportunity. Yeah, yeah. I get you. It sounds it sounds like crazy when you look back at it now

Genevieve Porritt  12:23

So crazy

Lauren Fenton  12:24

At the time.

Genevieve Porritt  12:26

But it was so lonely, even though I was spending every single moment trying to, you know, have time with people seeing different people making sure he got to see different people, all the classes but gosh, yeah, the internal loneliness and the isolation of that was looking back like really immense.

~music

Genevieve Porritt 12.54

I remember rushing from Dylan's book club class and quickly having lunch and jumping on a bus to meet a friend at the museum in town, rushing, rushing, rushing. And Dylan was sick on the bus, which wasn't out of the ordinary at all. He was sick on the bus. And I just decided right we'll get off the bus. We got off the bus at Kings Cross. One of the busiest places in London sat outside the station, me just holding him just constantly vomiting, being sick being sick. By this point, I sort of realised there was something like he wasn't quite right. It was out of the ordinary vomiting. And I was just sitting there cuddling him. I had this massive buggy and a load of bags, and I just couldn't move because I couldn't carry him and push the buggy and hold the bags with the risk that he might be sick all over all of us again. He was crying. Being sick. I ended up crying in front of just hundreds and hundreds of people who passed by us seeing us not one single person offered to help. I think that was like a significant moment for me. I felt so lonely. I just wanted to scream.

Rina Teslica  14:18

Gosh, yeah, that's horrible. Yeah. I think we've all experienced that type of experience that yeah, that type of internal loneliness. I like that phrase. Because you can be surrounded by so many people but yet nobody's really there for you or understands how you feel in that moment. So, it makes me quite upset.

Lauren Fenton  14:41

Yeah. And if it's a you know, sometimes strangers can be kind of surprising.

Rina Teslica  14:46

Oh, yes.

Lauren Fenton  14:46

With strangers.

Rina Teslica  14:48

Definitely. So with Lua when she was first home, she was connected to a ventilator. 24 hours a day. So leaving the house and going outside was such an issue, because you're carrying all this stuff. But also I was just overwhelmed and embarrassed, frankly, of being out with a tiny little baby that was connected to all these machines and all the eyes on you constantly. So it was horrible. So whenever I did leave the house, it was just a big deal for me. And this one time it was summer, it's really hot and I was just frustrated and I just didn't want to be in the house. So I like plucked up the courage to go outside. And I got on the bus. And when Luas on a bus and is connected to a vent, she need loads of suction, which is my biggest nightmare because suctioning Lua in front of other people it's just horrible because everybody stares and everybody you know, wants to know what's going on. And the machine is really loud. And the vent beeps when you take it off, and you disconnect it, so it's just horrible. So she needed a suction. I was putting it off as much as I could, and she's getting more and more frustrated because she needs a suction. So I was like, okay, screw, it gave her a suction. And I could feel the eyes. Did it all zoned out. And then I connected her. And this man looked at me and he just says, I just want to let you know you're doing an amazing job well done. And it was just just the best thing for anybody to say because I was. It just was horrible. Yeah. And it was just so nice to hear that from a stranger. Yeah. Yeah.

Lauren Fenton  16:34

How were your friends and family, your kind of usual support network?

Rina Teslica  16:36

How did it like change? Sort of like friendships that you had previously? Did they alter? Did they understand your situation, were they there for you as the friends previously or had friendships dissipated because of the situation you were in?

Genevieve Porritt  16:52

I think the first couple of years, I had a very kind of disjointed, I had mum friends. And because Dylan didn't have major differences from his friends when he was small, like we were all kind of struggling a bit with feeding or struggling a bit with sleeping, like all that stuff kind of took over. And then I would, you know, along the side be doing physio and stuff with him as well. But they were all doing sensory stuff and things like that as well. So I had like this mum, friend world. And then I would also still have like my old friends who didn't have kids who I'd go and meet at the weekend and go to the pub with go out with and never talk about being a mum and Dylan. And just

Rina Teslica  17:39

So it was your escape route

Genevieve Porritt  17:40

Completely it was like what you said, Go home, block it , just block it out. With a few wines. Talking about other stuff

Lauren Fenton  17:48

Just a few

Genevieve Porritt  17:49

Just a few

Lauren Fenton  17:49

Knowing you Gen it probably was more than a few

Genevieve Porritt  17:50

Just a few just a few

Rina Teslica  17:56

No comment no comment

Genevieve Porritt  17:58

i didn't put a straw in a bottle of wine or anything it was. Yeah it was fine, so it was a distraction. And I needed that distraction at that time. But as Dylan got older, and the differences became differences, and I just began to feel like I needed people who got it. I find I found it very difficult. I knew that there were ways to do it through charities, through forums through muscular dystrophy charities, and you could put yourself out there, I was so scared of being judged. And so I think I was so insecure about myself because I kind of lost my whole identity.

Rina Teslica  18:36

Right?

Lauren Fenton  18:36

Yeah

Genevieve Porritt  18:37

You become a mum. And that's all you are. You go to these appointments, you go to these baby classes, and your name is now mum completely. Oh, mum, could you and what do you think about that mum? And you're just like, yeah, i'm his mum, in this situation i'm his mum. But when that's all you're doing,

Rina Teslica  18:55

Yeah

Genevieve Porritt  18:56

You lose your identity. And all of this pressure you put on yourself to then put yourself out and try and make new friends is really tough.

Lauren Fenton  19:05

I completely understand that. I think I had another reason for not reaching out with Bea it was I didn't want to limit my expectations of her or like, and some of that would have been not wanting to face into the realities or the challenges that lay ahead. But I purposefully avoided for the first couple of years googling or, I mean, I'm crap at social media anyway, but social media groups, because I didn't that that was their story. It's not my story. And I felt a real kind of protective urge to not go there. Yeah, I completely understand that. I think for me, the thing that helped me feel like, I'm not alone was more things that I could pick up books and TV shows that There She Goes, yeah. Amazing. For anyone who doesn't know it. Look it up. There's a BBC series, drama series sitcom sitcom I don't know. It's, yeah, really good. I really felt like I was watching something that was our story. And some of the books that I picked up like Far From The Tree by Andrew Solomon, oh my god, that just for me, I suddenly felt like, oh, this makes sense now and there are other people that are experiencing this and a lot more than this. And a lot more challenging than this. Yeah.

Rina Teslica  20:23

That was my thing. So like, because I had been so isolating for the first sort of three years. I once Lua was in hospital, you know, like your phone goes off all the time your friends are checking in, like, how is she what's going on lalala? I started to blog about Lua. So it was all very medical, like she has a tracheotomy, she's connected to a vent, she's got a peg, this is happening, this surgery this that, that it was not sort of our life, like what we do outside of like the medical stuff. And then I Instagrammed loads people with Noonan Syndrome, but because Luas is so rare, and she's so affected by the syndrome it was so sort of off putting because it's like, okay, great. This kid in Canada has Noonan Syndrome, but he goes to mainstream school and he eats and he's fine, like, fine, relative to Luas life. So I was like, f**k this shit, I don't want to know. And I felt like I had been given the worst hand, you know? Like, what, and I just hated it. And then when Lua started school, and it's a special needs school, and I saw loads of children with difficulties, so many difficulties more than Lua, and it sounds so horrible, but it was like, oh, crap, there is worse than what I have. And it was comforting to know that there are parents who have it worse off than me, but are happy, thriving, got jobs, they are accepting of their children. It's not the end of the world. And that so it took three years for me to finally accept Lua accept what she will be like, accept her life accept my life, accept everything. And it was the best feeling ever. Yeah. Which is why I love her school. And I, like yeah, it's just been the best thing for my mental health and her obviously, because she's thrived.

Lauren Fenton  22:18

Yeah, and what about your support talked a bit about different friends. Can we ask you about your the fact that you're a single parent? And how that's worked?

Rina Teslica  22:27

Lol

Lauren Fenton  22:30

That must have sorry, we're picking all the great topics for you

Rina Teslica  22:32

Why being lonely tell us about being single

Genevieve Porritt  22:40

Why are you so lonely yes great

No, actually, it's, I would say that being I am less lonely as a single parent, being in a relationship that isn't right and isn't working and is an environment that isn't healthy for all of the people in it is a lot more isolating and lonely than going right i'm out of it now.  Yeah Let's find what we need to do and look for support. For me, my family are amazing and they have been my, my rock through everything and an amazing support, but in a very practical way. So they'll help me with Dylan. My dad's great at looking after him and has learned all of the things that he needs, so feeding and all of that. And they've been great at that. But I didn't have an outlet for an emotional support. And I spent a long time looking out for it. And then resenting everyone around me for not supporting me emotionally.

Rina Teslica  23:43

That’s the hardest bit, though, because you don't even know what you asking for sort of yes, you don't even know what you want. Yeah and your just annoyed at everyone like

like leave me alone but don't leave me alone

Lauren Fenton  23:52

Stop getting it wrong

Genevieve Porritt  23:54

Then i need a hug then stop hugging me argh.  Yeah. And so it was really f**king hard. It was really hard. Being in the situation where you're looking out all of the time for support when really, you kind of need to look in into yourself. Dylan and I moved out of our family home in towards the end of 2017. So he was 18 months and moved in with my parents, which was fun.

Rina Teslica  24:26

Into your childhood bedroom.

Genevieve Porritt  24:27

Yeah pretty much

Rina Teslica  24:30

Was it pink

Genevieve Porritt  24:31

Blue.

Rina Teslica  24:33

Oh yeah rebel

Genevieve Porritt  24:36

Yeah, I think it was an amaz... like it was the right thing to do. We moved back to North London.

Rina Teslica  24:44

So you felt at home in North London?

Genevieve Porritt  24:46

I felt at home but I think I then felt immediately more lonely because everything was on me. But kind of it gave me this kick to like, sort everything out, get everything done. We had to change all of his health care to North London moved it all up. But he then ended up mostly under Great Ormond Street, which was great, but it took, it took a lot of project management. That's when my file - The file came out!

Yeah

Lauren Fenton  25:15

Yeah see the file is good, really.

Genevieve Porritt  25:17

The file is amazing. And that's when I really was like, yes, I need to do all of this stuff. We need to get on top of it. And that's what I did. And again, I still had those friendships that were like this distraction when Dylan would go to his dad's at the weekend, I started to find yoga and meditation. And I started to try and fit in all of this self care in the time that I didn't have Dylan, but I'd also, you know, kind of do all my chores in that time and do all my clothes washing.

Lauren Fenton  25:52

I hope you didn't project manage it in the same way

Rina Teslica  25:57

Yes, 6 till 7pm Is yoga time, that's it!

Genevieve Porritt  26:01

I would, I still do, this is how I cope. I write myself a schedule. For my days, when I don't even have Dylan.

Rina Teslica  26:10

oh, my good lord

Genevieve Porritt  26:11

I'm getting better. I'm moving through it

Lauren Fenton  26:12

I get that.

Genevieve Porritt  26:12

But I would go back I need to do like make his feeds or do this or do that this is gonna take that long, but I have to do yoga. So I'm gonna fit that in. And inevitably, I never finish everything. And then I feel like I'm a failure. And its all really hard, this was all this kind of year when we were at my parents. And it was, I'm gonna say the worst year so far, because a lot of things happened in that year that were very difficult. And at the same time I was living at home with my parents didn't quite know what the future held. In that year was actually the same year I read the book, Not What I Expected.

Lauren Fenton  26:53

Yeah you talked about that

Genevieve Porritt  26:54

Yeah. Which kind of talks about applies the formula of the stages of grief for having a child, a disabled child. And I realised I had an a-ha moment when I realised that I'd spent the first two years of Dylan's life in denial. Same thing, never Googled stuff, never thought about future diagnosis. Kind of interacted a bit on Facebook groups, but actually in the same way you did Rina, I would, we were on an amazing which I would really recommend Facebook group Hypertonia UK, which was a very encouraging supportive in a similar way to the WhatsApp group suddenly found something that was very encouraging and supportive. There was a point where all the kids started to walk. Yeah. And I didn't leave the group, but I stopped looking at it. Because it was just too much difficult.

Lauren Fenton  27:51

There’s always comparison isn't there isn't there

Genevieve Porritt  27:53

Yeah

Lauren Fenton  27:53

It's really hard - I'm sorry to interject. But I'd quite like it in our circle of friends, the people that we've met, we've all got very different stories. So it can be tricky with somebody who's got the same diagnosis. While, that's brilliant for information and support. It can also be... the comparisons sneak in a bit too easily.

Genevieve Porritt  28:12

Yeah, I think it's interesting, isn't it? Because... but I think we all know, it's about us and not about them. So someone goes share something shares something where they go, Oh, my kid just did this. And you go, Oh, my kid can't do that. But we know that's about us. And actually the group is so encouraging and supporting and empowering in every other way. It doesn't matter. And we can all then go, oh, my kid can't do that.

Rina Teslica  28:40

Exactly.

Genevieve Porritt  28:40

Yeah but that’s you know okay, my kid can't do this

Rina Teslica  28:43

Accepting of one another

Genevieve Porritt  28:44

and you start having a battle with what they can't do.

Rina Teslica  28:48

It's great that we can all be like, Oh, well, I did this. And I did that. And he did this and but actually, what makes us probably feel better is the losses. Because then you understand that they have losses too. It's not just the wins. It's actually no she can't eat or she can't... she's not potty trained yet, or she can't walk out or bla bla bla Lua has so many losses, you don't feel alone.

Lauren Fenton  29:13

Yeah, it's just finding people who get you and get it, for want a bit of a term can really help those celebratory moments as well because I think when Bea did walk, we didn't know that was inevitable and she was two and a half that she started walking and Patrick and I just wanted to drink champagne for like three weeks like it was the most amazing feeling. But it can be much smaller milestones that a kid achieves or things that they managed to do that you weren't expecting that aren't the kind of celebrations that people in a more typical situation are having.

Genevieve Porritt  29:50

100%

Lauren Fenton  29:50

So the highs and celebrating that with people who get it who can actually say, oh my gosh, yeah, let's have a party because the kid had like two spoonfuls of yoghurt today. That's amazing. We get it

Rina Teslica  30:02

Like Dylan with a crisp

Genevieve Porritt  30:03

Oh my god, he ate three crisps If you'd said that to someone else. And also, I'd be like, you're gonna judge me because my kid eats crisps You have no idea - the happiness I feel when Dylan eats a small amount is oh, it's incredible.

Rina Teslica  30:23

I get it.

Genevieve Porritt  30:24

But yeah, it's those small wins. And you are feeling a massive celebration inside, and maybe that's one of the things about being a single parent is I didn't really yes, me and Dylan's dad have an amazing relationship. Now we have a great friendship. It took six months of therapy and a lot of commitment from both of us to communicate and co-parent successfully. And we do share the celebrations, I don't think it's quite the same as if we were together in a relationship.

Lauren Fenton  31:03

Yeah, I think it's so important having a group of people understand your experience and have been through a similar thing. And that's the whole point of this podcast, where we're here creating this thing to say we've had a similar shared experience of having a kid with a disability, and we want to be an outlet in a community for other people who are going through it. And I think that's true in life, just for any trauma or significant thing that's happened in your life you want to, or it's invaluable to find people who have that experience too

Rina Teslica  31:37

100%

Lauren Fenton  31:37

You know, we're not saying that other support networks and friends that you've had all your life or not invaluable too and supportive we're not say other friends are shit, you know, there's, it's just that it's additive. It's great to have people who've also had a similar experience, and you understand exactly.

Rina Teslica  31:57

I mean, I've been very lucky because my friends have been amazing from the get go. So like, once Lua was born, they were checking in on me. And they realised very quickly that I was overwhelmed with the situation. So I was not responding to text messages or you know, being very, like, yes, no fine type of thing. So they banded together and came to the hospital that I was in with Lua and just said, listen, we're taking you out for dinner, like, come downstairs. And they didn't even as to come up to see Lua at all. Like, they didn't not that they didn't care about Lua, but they understood that this, I needed them. And I needed yeah, it wasn't the purpose. So I have a group of five, six friends. So like three of them came to pick me up from the hospital, the other lot, were waiting at the hotel, waiting at the restaurant. And we walked in, and they'd set up a big box on a chair. I was like, What the hell, because I didn't have a baby shower. I didn't have any because it was my pregnancy was all over the place. And I was very unsure of where it was going. And I was just not in the mood to have a baby shower. So yeah, this box had like champagne in it. It had candles, bath bombs, just writing materials, just random stuff. For me, there was no baby items at all. And I was just so happy. Just my love for my friends just like grew 1,000,000% Because I didn't need to say anything to them. They completely understood. So I love you guys. Thank you. I'll never forget it. Yeah, it made my day. Yeah. And then from then on, it's always been like that. They also have learned like if I'm silent, then shit’s going down to like, leave me the space. And then they know that I'll be like, oh my God, this happened. And then they know what to do. Give me a drink.

Lauren Fenton  33:55

Then you've got the outlet as well with people who have similar experiences, exactly

Lauren Fenton  33:56

To say, okay, this happened with the trachie today or this, you know, where maybe that's an outlet for those conversations in those moments

Rina Teslica  34:07

Exactly. I'm very lucky.

Lauren Fenton  34:08

Yeah we all are

Genevieve Porritt  34:08

Yeah.

Rina Teslica  34:10

So Gen to finish, what advice would you impart on new parents, like at the beginning of their journey?

Genevieve Porritt  34:18

Yeah. I think this is really hard. I think what I'm going to say, is very difficult to give as advice to a new parent or someone thinking about having children, because I don't think you are really going to realise that you need it until you've had your child and you go, should have done that.

Rina Teslica  34:42

But hindsight is a powerful thing.

Genevieve Porritt  34:43

Oh, it's beautiful.

Genevieve Porritt  34:44

So for me, my I've had struggles with my mental health in the past and in sort of adolescence, so anxiety and depression a bit and different things. And when I had Dylan, all of that got triggered again, of course, because it's you know a trauma response. It gets triggered and anything that you've experienced, you've got that's easy to get to, again, any mental health struggles are likely to come up again. What I wish I'd had in place was the emotional support that I mentioned earlier of, of having someone available or something, tools or someone you can speak to whether it's professional therapy, or I also have been on somewhat of a spiritual journey. So for me meditation and yoga and the teachers of those meditations and yoga have been a really important support to me from an emotional point of view. Also, talking therapy, professionals and therapists, I wish I'd have had that available to me immediately and already had a relationship developed with someone or people that I could have called upon. And I think that's a really important thing to have, especially if you have if you're aware that you've had struggles in the past, your mental health is just so important to maintain. And what if your child is born with difficulties and you need to be extra strong? Is that the right you know?

Lauren Fenton  36:38

Finding your own strength

Genevieve Porritt  36:38

Yeah,

Lauren Fenton  36:39

And thinking about you, because everything is about the child, I feel like everything is, you know, I meet people seem for a while or other parents at school gets was how's Bea, how's Bea? And it's lovely. And it's well meaning, but it's also

Rina Teslica  36:54

How am i?

Lauren Fenton  36:57

Yeah, it's like, just a question in the round you know

Genevieve Porritt  36:58

You're just mum, and you have to... yeah, so the first couple of years was such a sacrifice of my life and my identity. And you just become mum, yeah. And you need to... you lose your identity and that's, I think that is the most isolating thing. And you have to find that again. And you have to find ways to look after yourself. And for me, it's so important that I fill my tank first. And that once my tank is filled with just such simple, I mean, we talk about self care and the things that are important, but this is getting enough sleep. Yeah, this is eating the right things. This is doing a tiny bit of exercise. This is for me, meditation, this is connecting and socialising with people who raise your vibration and keep your energy high are positive and encouraging and empowering. Just like the amazing Whatsapp group.

Lauren Fenton  37:59

Maybe a bit of flirting in there as well Gen.

Rina Teslica  38:03

Or alcohol you know...

Lauren Fenton  38:05

Just for the record, Gen is the best flirt that I have ever met. She is amazing.

Genevieve Porritt  38:11

I think flirting, obviously, now I am a single parent. Yes. Sorry. Just to clarify. As a single parent. Flirting for me is something that is, you know, like Rina was saying at the beginning, like being able to wash your hair and put your makeup on made you feel like this is something I can do for myself, okay, for me a little bit of flirting with the lovely waiter in a in a restaurant or a pub or you know, gives me a bit of myself again. It's when I was young, I loved it. You know, before the apps, this is something I love doing interacting with people being a bit flirty, being a bit jokey. I love it, it gives me part of me back. And I think it's really important to find those small little things in the same way that meditation and yoga do for me as well. So I think for, for new mums, having that is really important. The filling your tank thing is the biggest thing that I now know, when I look after myself. And when I do that, and I have a consistent, you know, few days or weeks of doing that, I then see the change in Dylan. I've done nothing for him. It's all been for me, but I see it in him. He's also struggled with his mental health and had really bad separation anxiety and anxiety and trauma from hospital scenarios and anything invasive, which is many things that he's had in hospital. I mean, there was points where he did literally get to a hospital door and vomit all over the floor with anxiety from not wanting to go in. Since I've worked on myself and learnt more about myself and healed myself. It's like, reflected in him. So when you when he went and yeah, when I'm stronger, he's stronger. Yeah. So you know, when I'm happier, he's happier. And when you realise that and you realise that the more time you take for yourself, obviously there are times when you have to just put yourself down sacrifice. He's had surgeries where I've had to go right, I'm not going to sleep for a few days because we're going to be in hospital. I'm not going to be able to do this. You still get little wins but those wins have to be smaller. They just have to be.

Rina Teslica  40:32

And you have to look harder for them?

Genevieve Porritt  40:34

Yeah. And you kind of have to like, fill your tank before. Yeah, let it all go and then look for the light at the end of the tunnel

Lauren Fenton  40:39

Switch it on which you can do

Genevieve Porritt  40:40

And accept and then not feel like a failure when you're so tired that you can't even do things. You're not going to be your best in that moment. Okay? Just have more cuddles.

Lauren Fenton  40:50

I'm gonna give you a cuddle now Gen. That was amazing. And, like, thank you so much for sharing your story.

Rina Teslica  40:59

For being so honest as well

Lauren Fenton  41:00

It's really, really amazing to hear. I think well just to end we wanted to introduce a feature that's going to be a regular on the podcast. So you're gonna be our guinea pig for the feature, which is hashtag awkward. Again, we're just picking things that we feel you will really you know, chime with you.

Genevieve Porritt  41:19

I’m awkward

Lauren Fenton  41:21

Lonely, awkward. Yeah. Hashtag awkward.

Genevieve Porritt 41:25

So this is gonna be my new dating profile

Rina Teslica  41:28

What a catch

Lauren Fenton  41:33

So anyway this is a new feature is it's basically that unsolicited but very well meaning advice that you sometimes or things that people say. It could be from a friend, it could be from a family member, it could be from a complete stranger. But that piece of advice that you get or comments that you get that just makes you want to scream. So do you want to give a hashtag awkward to begin Rina?

Rina Teslica  42:01

I've got a short and sweet, hashtag awkward. So it was at Luas school and it came from an another special needs parent funnily enough, thought they would know better but hey so this guy sort of came up to Lua's dad and was like, listen, mate, if you want to fix your daughter's issues, camel's milk.

Lauren Fenton  42:22

What milk? Say that again.

Rina Teslica  41:23

Camels milk.

Lauren Fenton  42:23

Camel milk???

Rina Teslica  42:24

Get some camel's milk in her.

Lauren Fenton  42:25

Oh my god

Rina Teslica  42:27

Lua's dad was like, what? what? Yeah he had the same reaction. He was like just, asked him to repeat it like three times. And we could not stop laughing like what??

Lauren Fenton 42:36

Where do you get camels milk then? So where do you start? Have you sourced some? Have you milked the camels?

Rina Teslica  42:41

I could go to London Zoo and get some. See if they would give some to my disabled child? 

Genevieve Porritt  42:47

Like whole, semi skimmed?

Rina Teslica  42:52

Yes, that's my hashtag awkward.

Genevieve Porritt  42:54

That's a good one.

Genevieve Porritt  42:56

I think I've probably had a few little, little ones. I think for me, I was going through this time of, which I still am, trying to learn the vocabulary that we wanted to use when we talk to Dylan and learn about how to have interactions with people because he uses a powered wheelchair. He's amazing in it, which members of the public constantly remind me of how amazing he is. And so trying to learn about how we deal with these interactions, how we talked to him about it afterwards, how he deals with it, you know, it's a lot to try and be positive. Also try and you don't want to teach the world. You can't be the best version to try and show you know, and yeah, so this one, we were going up to Finsbury Park to feed the ducks, and we were crossing the road. And that just crossing the road, you know, not at a crossing and this guy just stopped his car and let us go. It happens sometimes. Great. Thank you. Thanks very much. Okay, cross the road. Off he goes. We've turned the corner. This guy must have whizzed around the block and come back and pulled up next to us. Looks, opens the window, looks at me and says can I give him something - meaning Dylan? I was like, ok erm.... And he goes a gift. I want to give him a gift. And I'm like, Okay, and he get out of the car and he goes up to Dylan and he gives him £20.

Rina Teslica  44:29

Wow.

Genevieve Porritt  44:33

And he stands up and he looks at me and he's crying. You know,

Lauren Fenton  44:37

This is the guy not Dylan.

Genevieve Porritt 44:38

The guy, yeah Dylans fine Dylans like... I've got £20.

Rina Teslica  44:43

Win win

Genevieve Porritt  44:44

Yeah, this guy is so upset. Really crying. I'm like, thank you so much. That's really kind of you. Okay, gets back in his car drives off. So weird. I'm just it's really hard because you're like, Okay, this guy's obviously got some experience. Maybe like a loss. Yeah, definitely. So that's his story. It wasn't a time for me to teach him about

Rina Teslica  45:12

No, no, no

Genevieve Porritt  45:13

You know, but I find anything that comes out of pity really hard.

Rina Teslica  45:17

Of course i know we all do

Right. Right. Right.

Genevieve Porritt  45:19

I didn't want Dylan to feel pitied. I don't want to feel pitied. I don't want anything to be negative.

So I sort of look at Dylan and I'm like, How do you feel about that? And he's like mum we just made 20 quid hahahhaha 

Rina Teslica  45:34

Typical boy right

Genevieve Porritt  45:37

yeah we went up to the park coffee and doughnuts for mummy

Rina Teslica  45:41

lovely

Lauren Fenton  45:42

money well spent thank you for sharing that

Genevieve Porritt  45:47

Awkward!

Rina Teslica  45:50

Oh my gosh amazing

Lauren Fenton  45:52

Thank you so much!

Genevieve Porritt  45:52

Thank you!

Lauren Fenton  45:54

When we got another topic like awkward, lonely, desperate self loathing - we'll give you a call!

Genevieve Porritt  46:06

It was funny because its true

Rina Teslica  46:10

You said it. We didn't. Well thank you and I hope everybody listening enjoyed our first episode. We hope to not see you but hope you hear us again soon

~closing music

Outro

Lauren Fenton  46:28

Thank you so much for listening to the F**king Normal Podcast. We love making this podcast

Rina Teslica 46:33

Yes we do

Lauren Fenton 46:34

We are part of a bigger team, almost exclusively made up of parents of disabled children and our goal is to reach as many people as possible and create a community of support.

Rina Teslica 46:47

So if you liked what you heard, please like and subscribe so we can reach out to more people. You can find more information on this and other episodes at fkingnormalpodcast.com, you can join us on facebook and on instagram at fkingnormal_podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 47:11

So thank you so much for listening all the way to the end!  We’ll see you next time

Rina Teslica 47:16

Byyeee (kissing sound)

~Music continues “wake me up, loud as clouds, all my love for you”