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”
