Epiosde 11: Uncertainty with miriam elia
~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 0:16
This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.
Rina Teslica 0:24
I'm Rina.
Lauren Fenton 0:25
and I'm Lauren.
Rina Teslica 0:26
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 0:40
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 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 1:00
Because really, what the fuck is normal anyway? Me.
On today's episode, we will be tackling the idea of uncertainty, life is full of uncertainty, but having a child with disabilities can make that feel like an understatement. Some more common syndromes bring some predictability. But largely having a child with special needs is filled to the brim with uncertainty. And we're talking uncertainty on so many levels from that pre diagnosis anxiety where you have no idea what's going on to the post diagnosis cloud of what on earth does this all mean? Then you've got the day to day unknowns and curveballs and a big fat slap to the face be that medical or even developmental? But ultimately, the question is, what does this all mean for your child? What does that future look like? And importantly, how do we as parents learn to roll with the punches and live with so much uncertainty? So with that in mind, we'd like to introduce you to our lovely guest.
Lauren Fenton 2:08
So today our guest is Miriam Elia. Miriam is a comedian artist broadcaster and mum to two boys. Sid who's six and Natty, who's three and a half. Sid has a rare form of Leigh syndrome. It affects him in many ways. It's a mitochondrial and neurodegenerative condition and may significantly impact upon his balance muscle and speech. Sid is a beautiful boy. He's a happy soul who loves train sets and cars, and has definitely inherited his mother's sense of humour. When I asked Miriam if she took on the topic of this episode, she said 'uncertainty is my speciality!'. And I look forward to digging into that in more detail, probably sharing some dark humour and wisecracks with our lovely guest. Miriam, welcome to the podcast.
Miriam Elia 3:03
Thank you.
Lauren Fenton 3:04
And before we start, I just wanted to say congratulations to sit on his success this week got a big milestone.
Miriam Elia 3:10
My mind has exploded and I'm crying with light. And everyone like talk to you about it doesn't really just doesn't get.
Rina Teslica 3:20
Tell us what has happened.
Miriam Elia 3:22
So basically, my son has toilet trained himself after six years. Obviously, when we talk about uncertainty, I was picturing that I would have to be changing him forever. I did not think he could do it. And and he did it. Yeah, I just wanted someone to celebrate. Oh, yeah, it was
Lauren Fenton 3:47
A shame we're not in person with drinks today,
Miriam Elia 3:51
Yeah like going to have a beer, but it just happened. It just clicked. I think on my part, I had to put more effort in because I felt a bit like resigned that you know, tried so like so long that you you just kind of think maybe it's just one of those things, isn't it and then one day he got up and I said "do you need a piss?"
Lauren Fenton 4:21
Miriam was nodding her head for the listerners of the podcast.
Miriam Elia 4:23
and he just walked in a taxic way to the toilet. I pulled his trousers down and he did a wee. And I gave him a kiss give him a hug, gave him a chocolate. I made it into a big deal. And obviously then my younger one goes and does a piss he's been toilet trained for years and he goes well I want a chocolate, I did a wee and I'm like yeah, it's not special when you do it.
Rina Teslica 4:47
Oh, that's so cute.
Lauren Fenton 4:48
That's amazing news.
Miriam Elia 4:50
And then and then which so this weekend I was like right... It's okay when you're at home and they can have an accident you can clean up but I thought you know if you're gonna go out. Because I drag him around everywhere. You know, we go to like three museums in one weekend and adventure parks and we do a lot. And I thought, well, once he wets himself out and about, but he didn't look wherever we went. We went gardening centre, I said, do you need a wee, he put his hand up, took him to the toilets, did a wee. He was dry for two days. So I'm just like,
Rina Teslica 5:25
That is the best news.
Miriam Elia 5:28
Yeah, the only thing is he's not telling me I just have to I'm just using a clock and like every two hour or two you know, like, do you wanna but just it's control, isn't it? It's controlling.
Lauren Fenton 5:37
Completely. He's having to hold in. That's what Bea's like, I have to take her. She will not tell me. She's 7 now, she will still I just have to keep an eye and I feel like I know her bodily functions better than she does. But you know, like, but we'll get there. It's almost I don't know, it's so much. Yeah, it's amazing.
Miriam Elia 6:01
I put the nappies in the bin the other day, like I'm not going back.
Lauren Fenton 6:08
Ahh liberation!
Miriam Elia 6:09
Six years. It's amazing.
Rina Teslica 6:12
So why don't you Miriam, tell us your story, yours and Sid's story from pregnancy until he came into this world.
Miriam Elia 6:23
I'm from London. I grew up in Muswell Hill, my parents were both artists. And then they had me as an artwork. And I turned out to be a real person. Okay to cut a long strory... I mean it. The story of Sid ties in with my whole family history, because obviously, before I had kids, you never think anything like this would ever happen to it. You know, that's part of having kids, you do that test at the beginning, you go oh everything is fine. So, basically my mum's mum's family. We're Lithuanian Jews that went to Wales in the 19th century. And there was this, they call it the curse of the family like the brain disorder. And it was it went back a long, long way. So there's a lot of children that got it. But mainly, weirdly enough, it usually came out in people of our age, that that right?
My grandma had two brothers, who were doctors doing very well in their life. And suddenly they lost slowly the ability to speak, to walk. And it just got worse and worse. And I think it killed both of them eventually. But they would develop that in their 40s and so there was something in the family but it was very uncommon to think of a child having it, so obviously that conversation was just never had. So yeah, me and Russell, my partner, my husband now had our first child go through the normal pregnancy there was nothing unusual about pregnancy. Sid was born and he looked angelic and very, very, very beautiful. Which this is why the story of Sid is confusing because he didn't look there was nothing obviously different about Sid when he was born. In fact, people will come up to me in the street and "oh, what a beautiful baby. Oh my god here. Have some money for the baby. Oh, bless this baby" he had this shockingly blonde hair and blue eyes and is like very, very pretty. A real shock to me because obviously my my father is, is Middle Eastern. Well, I'm fully Jewish. There's no blondes in my family. So it was you know, I was like, "Well, it's my son. My son has taken after his father." Anyway. Basically, when Sid was finally diagnosed after this kind of car crash of the first two years. I call it a car crash because I had literally no idea what was going on. This beautiful child who just couldn't walk couldn't speak, was falling all over the place. Went deaf, had a stroke. I was like, "What's wrong with Sid?" And finally they took my blood sample my mum's blood sample, and, and Sid and they found this kind of defective mitochondria. And because it came from my mum and me, we now realise it was it was this, the family... this thing that was in my mum's family. So it was a huge shock. For me, and for my mum, and for everyone really?
Because yeah, so basically it helped explain what was wrong with my grandmother, who had also mitochondrial disease, but a lower level so she didn't become disabled, but she was because it's to do with like a lack of energy. You can become like chronically fatigued and not able to function basically just like lying in bed, and chain smoking. And that screwed up my mum and her siblings because they thought that their mother just didn't care about them. So it's quite quite a sad story, a lot of the punk movement started in my grandparents house because my uncle was one of the key people in the punk movement. And he was always mocking my grandma. But obviously, no one knew that she was suffering from the same disease as her brothers but a slightly different way. So yeah, when we found out when Sid was diagnosed all about this mutation, my mum just kind of had a I don't know what to say. She, you imagine, imagine perceiving someone a certain way, your whole life and then realising that they were actually just sick.
Rina Teslica 10:56
But it must have been like, yeah, like a light bulb moment, but also, kind of things probably went into place like a jigsaw puzzle, like, ah,
Miriam Elia 11:06
Yeah, it was exactly that. It was exactly that. And you saw my grandfather, like their marriage fell apart, because he resented her for being lazy and schizophrenic and mad and all this, you know, because when they met, she still had energy. They used to go on walking holidays, but she had four kids, and the mitochondria just declines with age. So the Leigh syndrome is like, it's like a balance. Sid was born with 97%. So it was just happened from day one. But if you're if you were born with like, 70/30, for example, you'd be fine up until like something age and then. So in a way, yeah, it was like a jigsaw. I think it was like a beautiful thing in a way. It was like an answer.
Lauren Fenton 11:50
Yeah. Yeah. Your whole family, I guess has got clarity and understanding from this.
Miriam Elia 11:57
And we also found that, so basically, my grandmother's side of the family, a lot of them still live in Wales. And they were all petrified that they would get this disease. My mum had to call them and say it can never happen to any of you, because you're all on the male line. It can only run through the woman. Gosh, that was like they you know, and they've been for years trying to figure out what it was sid was like, it's, it's, it's tragic, but it did offer closure, I think, in a big way.
Rina Teslica 12:33
So you waited two years to get a diagnosis?
Miriam Elia 12:38
Well, I think no one took me seriously for a long time because he people are very shallow. He's very beautiful. Yeah, and no one no one would accept that he was disabled. I was continually told, "Oh, he's fine. You'll get there. They're all different." and all that stuff. And because it's your first child, you have no idea what what it's like, and I wanted to believe that and then the turning point. I mean, I was already doing loads of physiotherapy with him and stuff to get him to walk. And I thought, this is a bit weird. You shouldn't have to do physiotherapy to get someone to walk. Yeah, but I was still believing oh he'll be fine. he'll be fine. You know.
And then I think the turning point was when we went on holiday to Tenerife, and I was I was nine months pregnant with Natty and and then he got flu. So children with mitochondrial is much like most children with disabilities, if they get ill, it's like, boom. Yeah, yeah. Not like normal ill, and he got flu. And I just let him watch telly and just sort of lounge about. And then he kind of got better after four or five days of a high fever, and he started eating again and stuff. But he lost, I suddenly realised he'd had a complete stroke. So he just couldn't move at all. Oh, my gosh. So when we got back to London, I think yeah, this was when me it was really trying for me and Russell Russell didn't want to think and I was like, this is really wrong. This is not right. And that's when we we got him into Great Ormond Street and, and also I was faced with this like, gun point scenario of my other son would possibly have it too. And I was so far pregnant, I was like, Oh my God. what am i gonna do? But I decided to go with what makes me happy and that's my kids. So rather than whatever nasty thing could happen, so once he was diagnosed, they were able to give him things that help people with Leigh Syndrome. So various like coenzymes
and within three months of safe had a complete stroke, couldn't move, couldn't even crawl. We start giving these Coenzyme Q 10, change his diet, he was walking within three months, she has something he'd never achieved
Lauren Fenton 15:06
Wow. Wow.
Miriam Elia 15:08
So yeah, that was that was an and also that was just after Natty was born. So I was like, very, very grateful for that.
Rina Teslica 15:15
How did you deal? Because obviously, you had your mother side with all of these kind of symptoms. So and then you had Sid who had similar symptoms, but not all of them. So there was loads of uncertainty. How did you deal with that?
Miriam Elia 15:39
Um, I don't know, I'm a very positive person. I have a great sense of humour. And I, I don't... I've only been really, really depressed once. And I vowed to myself that after that I was very, very depressed that one time, I think it was in my 20s that I would never do it again. I just try and make Sid happy basically.
Lauren Fenton 16:05
Yeah, I think that's the thing I I've definitely struggled with. That just living in the moment and just thinking, because I'm historically historically get over myself. I am traditionally a a planner, like I like to plan, plan, plan, plan plan. Control. So and then you decide to go stop fucking planning and start just living. I like, I've seen that in you in your things that you post about, like breaking into playgrounds in lockdown.
Miriam Elia 16:36
I did that. Yeah, I mean, I understand that lockdown was different for everyone. I don't judge anyone on how they react to it. But to me, I was gonna I'm gonna do the complete fucking opposite. I'm not, I'm not going to be scared. The only thing you should do is be happy and healthy and enjoy the day that you're given. And, I mean, I maybe got that from the Bible, because I was raised quite Jewish. That's nothing to do with it. It was just my instinctive reaction. And he'd just started walking as well. So I just kind of wanted him to, like, really push on with that. So I dragged him out every day and forced him to walk as much as he could. He was like, oh my god, now it's great. But then he was falling like, it was like someone had just he imagine some you have to look after someone has just come out of a pub. And they're just falling all over the place because they've drunk too much but all the time. So he was just like, trying to like enjoy everything and interact with everything and run free and I had to kind of run after and I did a lot at the beginning. I did a lot of the "Oh no, I'll help you if you fall over," but then I thought that's, I can't do that. I've got baby to look after as well. So I just let him fall over loads.
Lauren Fenton 18:01
Has his balance improved as a consequence of your unusual therapeutic method?
Miriam Elia 18:07
Much better, really. Such and he come on covered in bruises. And my mother in law thought I was abusive, like, "oh my gosh, my poor Sid" and I was like, "no, no, no, it's good for him. It's fine. He's gonna be fine. He has to go through this." We all have, you know, but she wouldn't let go of his hand. And I always say, why don't when you don't hold his hand because he needs to use his because his brain is damaged where the balance is. So he needs to figure it out himself.
Lauren Fenton 18:34
Find his centre of balance. Yeah.
Miriam Elia 18:37
But he's such a great kid, Sid like, he doesn't give me any grief. Like he's, he's, he's great. And he tries and tries and tries. And he gets there in the end. He can walk for miles literally, like he fought he uses his hands like so that's because I realised he had a lot of stamina. It wasn't that he didn't have stamina he did but he just he couldn't deal with a big open space. So if you were like in a museum or in indoors he could touch the walls and that would allow him to just keep going and get gauge his balance. So yeah, the other day he walked for about five hours like whoa, with two other children like with Natty and our neighbours, we went to the Design Museum The V&A all the way round Holland Park.
Lauren Fenton 19:26
That's incredible.
Miriam Elia 19:28
It is incredible. I was one thing I've learned from all this is like that these children make a banal things incredible.
Lauren Fenton 19:39
That's so true. This, this the moments I mean, you know, how much do you want to celebrate this amazing achievement this week? That Sid is going around in big boy pants. Those celebrations and highs and everyday things are huge. Not to go from positive to negative. But has there been times when Sid’s taken a step back. And how has that been? Because I guess on the topic of uncertainty, you know, me being a planner, I'm like thinking, right? Well, you do this and then this happens and then do this. And then something else happens when when something goes in the other direction, or you get a big kind of shock to the system or something you weren't expecting, how has that been with Sid? Or with yours as his parent?
Miriam Elia 20:26
Yeah, it's... I spent a long time being scared that he would be ill.
Lauren Fenton 20:32
Right?
Miriam Elia 20:33
Because I knew what the repercussions were that. But then when I stopped being scared and said, No, this is an inevitable situation, I can't control when he gets ill, he has to get ill. All I can do is, is make him as healthy as possible, happy as possible. So when he does get, we get back to where we are as quickly as possible.
Lauren Fenton 20:51
Yeah.
Miriam Elia 20:51
Because if I make him scared, and whatever it is, that's, that's just gonna make it worse. And the last time he got ill, was six months ago, and it was a fever. So I was petrified. I wasn't petrified. I was like, no, he's got the fever. It's like, if we go back to the beginning, again, we go back to the beginning again, and he was noticeably wobbly for about two weeks, but then he was fine.
Lauren Fenton 21:18
He got back there.
Miriam Elia 21:19
That's very quick two weeks. And the way I don't I mean, it's kind of planning I'd go Alright, well, the next three months, we're gonna have to do all this work, but it turned out to be two weeks. But yeah, the toileting thing is huge. Like, I think as you as a carer, you're, when you're a carer, you're a mum, but you're a carer and you think oh my, in your head as part of your hair going on. I might actually have to do this forever. And then you realise that they can and it's just like, ah,
Lauren Fenton 21:55
yeah, it's one less thing. There's one one step towards independence and one less thing that you have to do in that carer role. Yeah, yeah. That's amazing. What's your approach to therapy then? So you're you talked about doing physio before you even had a diagnosis for Sid? Do you throw yourself into all the therapies with him? Or are you? Are you employing your own Miriam style?
Miriam Elia 22:23
Yeah, I'm just doing things myself. I don't want my whole life to be a therapy session. Like, I think the best thing for him is like the best therapy that I could do was take him to the soft play that Natty loves, you know, and Sid tries to get around it too. And it's sometimes he does it more than Natty and he like, I often take a wheelchair, for example, if we're going to like a theme park and it's always Natty that sits in the wheelchair, always. Sid pushes him all the way around, and he won't get out, he'll have a tantrum. Yeah, but Sid's amazing. Like I never thought I'd see him physically did after what happened. And he's very, he's a bit of a mystery, because he kind of is all there. He's kind of following everything I'm saying.
Lauren Fenton 23:10
That's why he's got a hilarious sense of humour and pushes himself hard.
Rina Teslica 23:16
Talk to us Miriam about that, like the syndrome because I don't know anything about Leigh Syndrome. What is it? How does it? How are the symptoms?
Miriam Elia 23:23
So most disabilities are chromosomal, which is when the genetic code has something different, but mitochondrial conditions are. So in everyone's in everyone's body, you have billions of these tiny things called mitochondria, and their little factories, and they process all the energy that you take from your food. And they make something called ATP, which is your energy. And now, most of the ATP in your body is taken by your brain because that requires a lot of energy to work. So these are your like powerhouses. And in each powerhouse, there are lots of different points in it with different factory workers kind of making this product. So my I carry asomething called the 8993T-C mutation, which means that the point 8993T-C in each one of Sid's, mitochondria, there's a worker who's having a fag break and doesn't want to do the work.
Rina Teslica 24:28
right
Miriam Elia 24:28
It's called the respiratory chain. Depending which worker wants to have a fag break and doesn't want to do the work will have the impact on the rest of the body. Sid's one is the mildest so it's actually the last one in the chain. But it's still in it. All of them are important. So they are making energy but they're just not making the right product. It's not quite good enough for the brain to process. So if you so if you inherit 97 % of these defective energy cells from day one, you're not making enough energy to develop properly to grow to do all of those things, you're going to have problems. It will, it will make you disabled. In the case of my, my grandparents and her brothers, they all got maybe 50 or 60% and 50% working, which means again, even with half of your mitochondria working fully and some not quite so good, you can still be okay, but as you get older, your mitochondria like decline in function. So when you get to like 40, or something, the bad say you had 50 that were good and 50 that were bad, and then the good ones start to deteriorate, suddenly, you got more bad ones. So then the symptoms of Leigh Syndrome start to start and Leigh Syndrome is is devastating. So most children that that that get it die very quickly. The life expectancy is about five best, you know, it can turn them blind, deaf, like there's no rhyme or reason to what it's going to do next. Yeah, it's very, very, very serious. It's, it's, it's awful. And that's probably, if you've asked me, What was the worst thing that you can think on? I'm like, that sounds pretty much like the worst thing. But that with Sid's, mutation, it's different to all that. So most mitochondrial diseases are deadly and people die, children die of them very, very quickly. A lot of stillbirths are actually mitochondrial diseases where the child just didn't... died before they could live. I'm not through my travels now in meetings with lay syndrome networks and stuff like that. A lot of women that have lost like all seven children to it, or like some hardcore stuff. But he still, you know, we hope you He will live into adult life and I think he will I think he's very, very strong. And they said, at Great Ormond Street, they said there's a very good chance that he will. So but yeah, you I am dealing with with something quite serious, but I suppose we all are.
Lauren Fenton 27:21
Yeah, that's a lot to process they to like, I mean, you clearly hang on to that hype, and you live live for the day, your life as full as you can in that moment. But it's I think anybody would be challenged with considering that and considering the you know, the worst thing.
Miriam Elia 27:40
Yeah, I'm always you always have to train yourself not like the worst case scenario is your imagination.
Lauren Fenton 27:48
Yeah.
Miriam Elia 27:49
You know, if you, if you're always thinking of this, we tend to think in like multiple different directions, and then this could happen and then this. And it's my mother is like the worst like that. Like, you put her in any situation, and she'll find 10 things that might kill your child. Like, you know, with that said.
Lauren Fenton 28:11
I mean, I guess it's it's that certainty. So you know, talking on the subject of certainty Nobody has that. It's bollocks anyway, nobody knows what's going to happen tomorrow.
Miriam Elia 28:21
No, I genuinely feel like I went through some weird process, like before the lockdown, because of the intensity of what has had happened. And I felt weirdest thing when people were like, Oh, it's terrible. I was like, No, it's fine. It's great. We're off to Lego Land. And the weird thing is like, the more you love your life, the more they do. And then they get better. You know?
Lauren Fenton 28:53
Yeah, so find fun in the chaos and uncertainty of it all, not even, like, necessarily like meaning or like some big profound thing, but just find the fucking fun and live it.
Miriam Elia 29:04
Like, I do have faith in God. And that has really helped me. But I think that if there is meaning, then it's to enjoy this amazing life that we're blessed with. And these children are like, fantastic. And I don't think I would have understood that before I had Sid. We live in this very self absorbed culture. Yeah. And we're always told like your career your career and the TV and the radio and it's like, I think I think that those things are like, okay, they're important to people but but sit is more important, like my children are the most important thing and I love them. So you know, but I decided to just not to be scared of what would happen because you know, it's like que sera sera and the less scared you are of things, the less likely they are to happen and those So learn that when really shit things happen you deal with it fine. Like you're fine. If something appalling happens, then you'll be you'll deal with it like. You will.
Lauren Fenton 30:13
and you can't control it anyway.
Miriam Elia 30:15
I remember this point and like no I just decided to go to Legoland was. We had the best day ever said loved it. He was just like, he went on a train and we had to try and get him off the train. But he was on his Lego train about 20 times. Because when you look at when you read about Leigh syndrome, it's just like your jaw drops. It's just evil, you know? So yeah, that's that's kind of what I do.
Lauren Fenton 30:44
Lego Land is part of your your medicine, I've never been to Legoland confession. And now I really want to go like
Miriam Elia 30:55
My parents would never have taken me to a theme park like no
Lauren Fenton 30:58
Mine wouldn't! They were like totally against themeparks.
Miriam Elia 30:58
Totally. We weren't allowed to watch Disney they were like really, really anti stuff like that. They really like
Lauren Fenton 31:07
My dad was.
Rina Teslica 31:08
Girl's, you missed out. I went to Legoland as often as my mom would take me in order to get a Lego Land driving licence.
Miriam Elia 31:19
I have to say, since I've had Sid like, because we get loads of free tickets to theme parks. I've been doing a lot of things. He loves roller coasters and stuff but I feel like it's the childhood I never had. But I just think it's a bit of fun. You know, it's sort of it's tacky but it's kind of like for Sid, Sid loves stuff like that. So whatever makes him happy. Like you said if you're not thinking too much about the future, then
Lauren Fenton 31:47
Yeah, living and playing, maximising the fun Yeah, I wish I could think like you more of the time Miriam. I'm gonna take this as I like, right okay. What Miriam do right, we're going to Legoland guys. Do you talk to Sid about? what how do you explain things to him? Do you explain it to him?
Miriam Elia 32:11
He's not gonna comprehend what it is and it's his normal and this is all about fucking normal. This is Sid's fucking normal but for Sid this is all he's ever known. That's just how he experienced his life. He's not bothered by it. Yeah, no. laugh about it all. I mean, we laugh. I don't I can't sit there and talk about mitochondria to a five year old.
Lauren Fenton 32:36
And how is Natty and his relationship.
Miriam Elia 32:38
Incredible, incredible. Natty is an amazing kid. He's very, very, very bright and very funny. And he really keeps saying oh Sid's not talking. Sid not talk. But he loves him, you know, they cuddle up together. They sleep in the same bed. Sometimes he sits on Sid's face and tickles him. They find ways to play together. It's really beautiful. Obviously said can't play. You know, like dress up as a cowboy. You're doing it he can play hide and seek though. He's pretty good at that. But he they nonverbally have an incredibly close connection because they've always been together like we do everything we're like a little team.. me. And I make them laugh. I make them laugh all the time. So they they'll use a lot of comedy a lot of slapstick silly voices. I mimic people that are supposed to be looking after Sid sometimes
And you know, he'll blame Sid for things all the time though, because he knows that they can't defend himself. Like he just threw a flowerpot all over the beds that there was compost all over the bedroom. And I came into the room and it was like compost all over the bedsheets, all over floor. And I said "Who did this?" and he went "Sid" and I was like Sid didn't do it. Or like, scribbles all over the wall and goes Oh, yeah, "Sid did it" I'm like Sid does not have the motor control to do that.
Lauren Fenton 34:16
Yeah, I guess it's like blaming, blaming a younger sibling or something. Anyway, it's the kind of thing that siblings do anyway.
Miriam Elia 34:23
Yeah, it's, it's strangely normal. It's just there's no words.
Lauren Fenton 34:27
Yeah.
Miriam Elia 34:27
But weirdly there's a kid in in that his class at nursery, he's autistic and can't speak. And, and Natty really loves him and wants him to come over and play. And it's like, because he's that's what he's used to is he's developed like a connection without words.
Lauren Fenton 34:45
That's interesting. Really beautiful. Yeah. And do you do you and your partner kind of have the same your husband have the same approach? Is he out the door to Legoland at every available opportunity too?
Miriam Elia 35:02
Complete opposite he's like. He loves Sid to bits, like, you know, he's always playing with him and cuddling him in he's very close to him. But no, he's not. He's more into like, safe, keep safety and you know, like, always holds his hand all the time and very concerned that he might fall over, whereas I don't care that he falls over. Because I'm like, well just get back up again.
Lauren Fenton 35:32
Different approaches… that must be tricky sometimes to manage?
Miriam Elia 35:35
It is. We have a unique balance of like, so basically, I take the kids out on these expeditions and do all the Mad stuff, like throw Sid down a waterslide, or I don't know. Like, I took him ice skating. He likes it. I mean, I do it, because I think it's funny, and I don't like Natty gets hurt quite a lot. He's three he falls in there, keep that three year olds always running around and bashing their heads and falling into things. And so I just take it like that, then Russell does them all kind of like playing at home and being at home and cooking and but you can see that he gets anxious about Sid being as free as I let him be. But you know, it's just gonna be part of of life. It's fine. Because in fact that that feeling of control.
Rina Teslica 36:34
I was quite similar with Lua
Miriam Elia 36:36
You know what's hilarious. I've gotta say this, but anytime a child falls over, around, you know, in the playground or whatever, and goes "ahhh" like that, Sid goes "ha ha ha ha ha"
Rina Teslica 36:51
Oh my god, I get it. Like if you don't make a big deal out of anything. They take it as it's a big deal. You just move on. And
Miriam Elia 37:00
This year, right, he's had one or two, four, he had one full that was pretty bad. In London Zoo. And his nose got really duffed up and he has Sid's very vain he likes looking in the mirror.
Lauren Fenton 37:12
Because he's beautiful.
Miriam Elia 37:15
He knows that. So when he saw his nose all duffed up and it was just before our wedding, he was like, I've seen him have equally as bad bruises but not on his face. And he's in wasn't that bothered, but it was his face. He was like, oh my god, like he's like Kate Moss like 'this is insured'. So that I had to do a lot of you know, like cuddling and all that stuff. But but other than that, I thought actually, he's doing pretty well. Like my friend. He's got a "normal kid". But he's like a bit. You know, the one they always they don't sit still there was running around.
Lauren Fenton 37:50
ADHD.
Miriam Elia 37:51
Yeah, a bit like that, basically. And he's been hospitalised like five times this year, like broken arm broken leg, throwing himself into a paddling pool and drowning. You know? So I thought, well, Sid's okay. He's quite cautious. I think swimming pools used to freak me out because I'll fall in the pool. But he knows his like, limits. You know, he's not. He's pretty good like that. It's just the wobbliness Yeah, I think it's, I'm used to it. But most people around me are like, oh, like, wherever you go with Sid, people like, you know, they all think he's about to fall or something.
Lauren Fenton 38:32
And sometimes, like, because bees quite I don't know if she's that wobbly. But she's got balance issues as well. And when she's, if she's tired, she gets really wobbly. But she's much better, like you said about not holding hands. And it's really it's been really hard for me to like, learn to let go. But if you if you hold her hand or hold her, she she leans on you and actually the times when she's had some of the worst falls is when she's leaning on you, but you don't kind of realise how much and you let go or walk away and she's just like, like, you know, yeah, proper comedy slapstick fall
Miriam Elia 39:08
It doesn't work. Just let let them figure it out. What you just said about slapstick, I mean, he loves watching anything where people fall over and hurt themselves.
Lauren Fenton 39:19
I wonder where he got this, like, sense of humour for Miriam. It's a mystery!
Miriam Elia 39:24
Really love? It was from my grandma. She's the one that had Leigh Syndrome.
Lauren Fenton 39:28
Oh, really? Oh wow
Miriam Elia 39:29
She was extremely depressive. Never got outta bed like chain smoking 1950s housewife from Wales. She grew up in a thunder valley in Wales. But she was so funny. So all her friends would just come and sit around a bed and she'd tell them all these stories and stuff and they'd all be laughing but she's really she knew how to make people laugh, but she just had no energy. I remember when I first picked up Sid, it's like, I felt her. You know, it's something in his face. Is the mouth I have I don't know, but I just felt her presence very, very strongly when he was born. And I called, I called him Sid, after her brother that died of Leigh Syndrome.
Rina Teslica 40:10
Wow. Wow, full circle.
Miriam Elia 40:14
Full circle. And apparently she said to my mum before she died, she died in the 90s. I'm coming back to this life as a as a little blonde Angel.
Lauren Fenton 40:26
What?
Miriam Elia 40:26
What! So there's a lot of like weird, superstitious. Yeah, she said that. I'm coming back as a blonde cherub or something like that. Yeah.
Lauren Fenton 40:39
Woah. I don't really know what to say to that.
Miriam Elia 40:42
One of those weird things, like I said, we must call him Sid oh, I love Sid. So that's grandma's brother? Oh, you know.
Lauren Fenton 40:48
There's a lot of meaning in that.
Miriam Elia 40:49
Did you find that when you were pregnant... like, because I found that I knew a lot about the child before they were here. Like, like, like, you can feel their character.
Lauren Fenton 41:00
I don't know if I did. Yeah, it's hard to separate kind of what your expectations and like thoughts are, versus whether you genuinely feel it, I don't know. But I think very quickly, even before their character really developed. So like even when they're little baby, I feel like you kind of know, just from the look or they're like or just instinctively, you get a bit of a vibe of what your child is going to be like what you've said about Sid being really like more robust than perhaps other people might give him credit for or that reading his diagnosis on a piece of paper would imply. I definitely got that quite early days with Bea as well, that kind of she's determined. And it sounds like from Sid, it comes from him as well. It's not like you're pushing a kid that's like screaming No, I don't want to mummy like, it sounds like it's it is in him and you're helping him to get up. That's, that's interesting. I feel like that's the case with Bea as well. There's definitely a driver and a determination and similar to Sid.
Miriam Elia 42:04
That's so inspiring, I think.
Lauren Fenton 42:06
Yeah, coming back to trying to control everything and planning and driving forward. It's almost like they can do that in they're trying to achieve something or do something or not fall over or whatever it is. And then you're having to go in the opposite way. So go right, actually stop trying to drive forward and be determined and control everything and get to my next career milestone, and wherever the fuck it is. And actually drop everything have fun and go to Legoland. I keep coming back to Legoland. It's an interesting contrast, isn't it?
Miriam Elia 42:42
What Leigh syndrome is gonna do next is not in my control. Right?
Lauren Fenton 42:46
Yeah, I was gonna ask how is your way of dealing with that uncertainty and those unknowns? How does that spill over into the way that you live your life outside of parenting Sid. Has it had an impact in terms of your career, or your relationships, or your life outside of parenting?
Miriam Elia 43:05
It's brought me much closer to my husband. It's hard to articulate it. But yeah, we both feel the same way about things. I think my my sense of humour is much more on point now than it was.
Lauren Fenton 43:19
Yeah.
Miriam Elia 43:19
I mean it was, it was on point. But I, I don't know, you get older and wiser and these experiences shape you. I know, it's my wit my normal is like being with this wobbly child. And signing, and all this stuff you know, I can see the funny side of it all. And I think Sid does too. Because you know, you gotta laugh otherwise what right? Yeah. So it hasn't affected my, my work that much. I think just my mindset, like the way I approach things, I think it will like I said at the beginning I think eventually I will make something quite specifically about this. Because it's it's most of my life, you know, is looking after these kids, you know, and then running to the studio and doing like the whole of we do Lock Down that I did. I was like basically looking after the kids putting into bed, going to the studio and painting all night and then coming back in, you know that. That was that was what I was doing. And it does. Yeah, that fearlessness, that choice. It does inform the way you look at things. Because it's a choice. I don't want to get into too much religious stuff, but it is a bit about kind of going I have freewill to make these decisions. But I'm not really ultimately in control. Yeah, you know, and if there is a God, then this soul was given to me to look after and then if if a tragedy happens, a tragedy happens, you know, people say, Oh, having a disabled child must be so difficult. I think most every time they say I say Sid is basically like an angel childlike, you know? And he never answers back. I mean, he has his meltdowns and stuff, but it's like that we all did. I mean, it's just living in the moment, isn't it? My fucking normal is like it's like I'm constantly I'm somewhere between like, what I want to be with just like get up and oh fuck he's gonna fall into the pond!
Rina Teslica 45:38
That's your fucking normal
Miriam Elia 45:42
like, okay yeah I can be like get I have to be get get up no reaction, all that. But at the same time I'm always like Shit!
Lauren Fenton 45:51
It's treading that balance
Miriam Elia 45:53
because he doesn't have he's got shit balance but it's like I'm always like, that's that's normal day I have specific places that I go that I know are like good, but I can relax a little bit. Do you think that these experiences like make make you not being like Oh, I'm such a good person that makes you more humble and more
Lauren Fenton 46:17
Shit yeah, actually a friend once said to me, a friend said to me, I'm a much nicer person since I've had Bea. And then and it kinda, she was a bit drunk. And I think it came out that she basically didn't like me very much. But she likes me now. In a weird way, I kind of understand it. Like i i feel like i Well, I definitely didn't have as much empathy. Yeah, I was probably in a bit more of a bubble of my own like, without sounding wanky, like my own career success and like life success and
Rina Teslica 46:58
Yeah, I totally get it. But I think I think this has made me much more like cynical. I think I was a lot more like romantic about life. And now I'm much more like, I can't stand the shit. I think being a parent of a child with a disability your bullshitametre is just like the you just don't have time. I'm much more like snappier and much more like to the point where before it would just be like yeah, like it's great. Oh my god. I don't know. I don't know if it's made me.
Miriam Elia 47:34
Made you more grounded?
Rina Teslica 47:35
Yeah, yeah, definitely. Plus, I'm a Pisces. So I'm very I was very like, oh, floaty. Yeah, that got cut very quickly.
Miriam Elia 47:43
I think as an artist, like before I had kids, I was extremely cynical. And almost the opposite to you actually. Like really, like, slightly angry, cynical, very self motivated, acerbic. And this has made me kind of happy. Free, then, like, connected me to something. Yeah, does that sound ridiculously twee.
Lauren Fenton 48:13
No it's beautiful. And so everyone's experiences will be different. But actually, if it can bring you a freeing it sounds like actually all of us have described something that's freeing
Miriam Elia 48:27
Free from societal expectations anymore.
Lauren Fenton 48:31
Completely completely that.
Miriam Elia 48:33
All this garbage that we tell our children I don't even I don't know what's true anymore. Like, you just don't have to think about any of that. Or what colleges do you go to? what university? Ooo.
Oh fuck that shit. Yeah, that is very freeing not to be Yeah. With my older daughter who's nine now? Yeah, there's like, what senior school is she going to go to? And there's always kind of conversations and I it's just so nice to feel actually I just want her to be happy and wherever she's happy, and wants to go if she can go there. Let's do that.
Life's too short for that shit, man.
Lauren Fenton 49:13
Thank you so much for like coming on yeah, and giving us the Miriam Elia Guide to Life. Guide to Being a send, SEND mum and having fun.
Miriam Elia 49:27
It's a blessing. Everything in my life that I thought was bad, or like terrifying. turned out to be a good thing in the end like a really good thing. So
Rina Teslica 49:39
That's lovely.
Lauren Fenton 49:41
We should leave it on that note. Thanks so much. It's been really great to chat to you.
Rina Teslica 49:47
Thanks. So so good to have you on.
Miriam Elia 49:50
We should all go for a drink soon or something.
Lauren Fenton 49:52
Ahh hell yeah!
Thank you so much for listening to the fucking normal podcast. We love making this podcast? Yes, we do. 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 50:16
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 fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 50:40
So thanks so much for listening all the way to the end. We'll see you next time.
Transcribed by https://otter.ai
