Episode 19: Uprooting and rerouting with camilla cook
~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 0:01
Okay Rina, you seem stressed what's going on?
Rina Teslica 0:05
Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.
Lauren Fenton 0:20
Ah, yes, you should try the new Hibi app.
Rina Teslica 0:25
An app?
Lauren Fenton 0:26
Not just any app. It's disabled parenting mega PA organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place?
Rina Teslica 0:40
Hang on. spell this out to me again.
Lauren Fenton 0:42
hibi HIBI it's a Disabled Parenting organisation app. I wish I'd had it when Bea was younger. It gives me a sense of control over well, the uncontrollable
Rina Teslica 0:55
Sounds intriguing. Who doesn't want to organise disabled parenting chaos? One notification at a time?
Lauren Fenton 1:01
Haha. Yes. It's my new sidekick Side kicking the shit out of disabled parenting organisation.
Rina Teslica 1:08
That's the least catchy strapline I've ever heard Lauren. Yeah.
Lauren Fenton 1:12
Okay, fair enough. They won't want it. But if you like Rina, and I want to give it a go, you can download hibi for free on the app store now.
So today, we spoke with Camilla Cook. Basically, her whole life was turned upside down. During the pandemic, when she was pregnant with her youngest Sylva, that it's about uprooting and rerouting because she had to leave the country she was living in. Life was changed by the conditions that they discovered to do with her unborn baby and when Sylva was born, but also her life was changed in respect of her work, where she was living, she left friendships behind. It was a huge, huge change in her life. As Camilla refers to in that episode, she really does acknowledge, you know, she had so much support and so many advantages. When it came to this situation, her privilege at being able to come back to the UK. In the situation she was in having family members here that were able to step in and support her getting her tapped into the NHS. And systems of support may have taken time, but it was it was absolutely there for her. And yeah, I think it's just we are very aware of that. And she's very aware of that. And so it's just her story and her experience of uprooting and rerouting Do you feel you've rerouted your life as a consequence of Lua. Rina, what's changed? What's the knock on impact been?
Rina Teslica 2:54
I think when you have a special needs kid, it's going to change everything. Not only like, the way that you view your child, and all of the hopes and dreams that you had for them. And also you as a mum, but I think for me, it's had knock on effects on how my friendships have changed. Not to say that I don't love my friends and their fab. Because you are and I know you listen, loving.
Lauren Fenton 3:17
Careful what you say.
Rina Teslica 3:18
But I don't see my friends, especially my like childhood friends or girls that I went to school with and grew up with, you know who you are. I don't see you. And I think there's a group of four or five of us. And it's just that our life paths changed. You know, some of us, some of us have children. Some of us have special needs children. Some of us are like travelling the world and doing other things. Some of us are like, super into our careers so incredibly busy. And I think it's having that acceptance that it's not that I don't love my friends, but this is just what it is for me. Now. It may not always be like this. And I think in the beginning I was I tried really hard to maintain those friendships. And it's hard, hard because you're juggling so much other stuff. Something has had to give and sadly, my friendships I've had to give.
Lauren Fenton 4:12
Yeah, it's hard when it's I think it's true with anything that's going on in your life. It's like, actually, you do want to connect with people who get it when you at times, and when your time is extremely limited. Like it's hard to do all the maintenance that's required to keep every friendship going at the same pace as it once did. I think that's kind of natural as you get older and your passcode in different directions. But it's Yeah, particularly when you've got a kid that
Rina Teslica 4:41
exactly and then you end up you know, just because of the situation that you're in, you are surrounded by other parents who are in the same kind of same or similar boat as you. So naturally, you're reaching out to those people because they get it.
Lauren Fenton 4:55
Yeah, yeah, definitely. I mean, I think my life changed in lots of ways. job which we talked about a lot and then passed on the broadcast but, and wanting to go into and do something in the SEN space. And I think that's true. A lot of parents not all and it's like you don't have to be but it's definitely kind of changed what I want to do professionally and where I want to invest my time. It's hard to know, isn't it because you don't know what you would have done anyway, but erm.
Rina Teslica 5:25
True true
Lauren Fenton 5:27
It's changed a lot. It's probably changed how I parent my older daughter just because I've got that big fat perspective on what really matters. So this is uprooting and rerouting I hope listeners enjoy.
This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.
Rina Teslica 6:05
I'm Rina, and I'm Lauren. 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 6:21
Prepare to sometimes laugh, sometimes cry, but hatefully 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 the disabled child or adult. So expect bad language and quite frankly some brutal honesty. Because
Rina Teslica 6:41
really what the fuck is normal anyway?
Camilla, our guest today currently lives in Brighton with partner Will, five year old son Freddie and Sylva, who's just turned two. As an English teacher, she was living in Tanzania with Freddie and well, when she became pregnant with her second child. Silva has now got a peg. She's nonverbal and is utterly gorgeous. Even on Zoom, when we last chatted she charmed the pants of Lauren and I, she doesn't yet have a diagnosis. But Camilla is waiting on the results of genetic testing. So hello, Camilla, welcome to the podcast.
Camilla Cook 7:28
Thanks for having me. Really, it's lovely to be here.
Rina Teslica 7:31
How are you feeling? Not too nervous?
Camilla Cook 7:33
A little bit nervous. But I was thinking back to the reason I got in touch with you first. Because because I just loved listening to that very first episode just was like, Yay, voices like mine. And I just, I'm just really, it's really nice that you've made time for me. So
Rina Teslica 7:49
we're very grateful you've taken the time to be on the podcast. So can we start at the beginning? Where were you when you fell pregnant with Sylva and kind of what was happening with the pregnancy and all of that?
Camilla Cook 8:05
Yeah, so I was some we were in Tanzania. And as you mentioned, and I was teaching there in an international school, and that's kind of what my our life had all been for the last five years. Prior to that we were in Thailand. And I had my son in Thailand. And it was all pretty straightforward. And you know, despite no opportunity for pain relief during birth, because most of them have C sections, His birth was pretty straightforward, and everything was fine. And, you know, it was the sort of glowing, lovely, initial year and a bit with him. And then we moved to Tanzania, and I've just feeling super confident about being a mum that can handle like, having a baby in a developing country. And so yeah, we try it. We're trying quite for quite a long time to get pregnant with silver. And then we did. And it was just a funny time because it was COVID. And Tanzania had a policy at the time and I need to pick my words quite carefully because it was literally illegal to mention the word COVID or Coronavirus. You couldn't talk about it. You couldn't put it in writing, you can put it in an email. So the school that I was working out we had to refer to it as a respiratory illness. Because of the respiratory illness. We closed the school following the lead of the rest of the world.
Rina Teslica 9:30
Wow.
Camilla Cook 9:32
It Yeah. It was really scary because the government then sued the school for doing that because there was no COVID in their eyes. It stopped at the border didn't cross over. And the president at the time was basically really worried about the economy economy, because if the if everything shut down, unlike here, it would mean people would starve to death and I think you know, with this country's best interests at heart He, he basically was like, Right, we can't, this can't affect us. It has to be we have to push on through it. But all sorts of interesting advice was flying around, you know, you just go into these inhalation chambers and suck on a lemon and eat a bit of ginger and you'll be fine. Yeah, it just it was a crazy time. So there's a lot of anxiety anyway, erm.
Rina Teslica 10:22
Were you worried?. Were you because I'm sure that you were talking to your friends and family in the UK and abroad who were living a different COVID life? Were you kind of stressing about the situation?
Camilla Cook 10:37
Yeah, hugely. It was really stressful, especially because we got COVID really early on. And there was a weird thing around it because
usually, was really stressful, especially because we got COVID really early on. And there was a weird thing around it because our friends, we'd been away with them for the weekend. And they then had it and knew they had it but didn't tell us and then we got it and found, so it was a weird dynamic with them. And there was just a lot more kind of cage Enos around it. Because there were fears that we would be if anybody with it would be taken to like a what do they call it like a quarantine camp thing that they built for Ebola. So right out by the airport, there was this huge building, which was just concrete boxes. And people were talking about us being put in there if you had COVID. So there's loads. Yeah. And then we're watching obviously, the UK NEWS to get our news. And I don't know if you remember the John Hopkins University map that everybody was obsessed with the beginning, which like showed all the cases across the world. And I was one of the 500 and something people that Tanzania acknowledged as having COVID, because I got tested. But from then on that people went for tests, but the only result that was possible was that it was negative. So essentially, you either didn't get a result, or you got a negative result, because there were no cases it was just not allowed.
Lauren Fenton 11:53
And were you pregnant by this stage or not?
Camilla Cook 11:55
Oh, no, this is before but the whole kind of atmosphere of of the time. I mean, everybody experienced it in their own way, didn't they? But in in Tanzania, it was it was a weird one. And we kind of got to know medical the medical services quite well. So when I did become pregnant, I was aware of the limitations basically, of what there was there, there was all sorts of information going around about the how they had one ventilator in the whole country. And having just strolled through Thailand and pregnancy and doing it there suddenly, it became a lot more kind of scary. And actually, we went to our 20 week scan and just said, Oh God, imagine if something was not right. And then something wasn't right. It was, you know, the whole Tanzania thing has just added a weird flavour to it. It was all it was all very, very stressful. And I wish I could say, you know, I just took it in my stride, but no doubt.
Rina Teslica 12:51
Did you know, kind of, because you already had your baby had Freddie in Thailand? Were you planning to have Sylva in Tanzania? Was it always I'm gonna fly fly back to the UK and have my baby there.
Camilla Cook 13:06
Yes, we were always going to fly back. That's what's recommended. Which gives you an indication of the facilities that they have. And also another want to come back to it. But you know, just made us so aware of how privileged we were that local people didn't get anywhere near the same care as us. And that was quite a weird dynamic as well. Just being conscious, very conscious of our privilege. But anyway, yeah, we we were always going to come home. We ended up having a 20 weeks scan and she had a clubfoot and she was very tiny. And then there was abnormality with the uterine artery, the flow something, I forget all of the technical terms, which I think is this like, sort of defence mechanism because I can't hold it all in my head. And, and that's okay. So yeah, we knew that we needed to come back, but we still thought that we'd re,turn. So we left, our left all of our apart from a suitcase of stuff, we left all of our belongings, furniture, the cat, flew back left my job didn't say goodbye, really, apart from just see you on on the other side. And most people who are pregnant would return anyway. And then and then come back to Tanzania. So we just assumed it would all be fine. And then it got to Sylva was born. And there were more and more complications in the UK, and we realised that we weren't gonna be able to go back and we made that decision, which was actually a huge relief. When we did decide that we were going to stay stay here.
So yeah, it was a big shake up. I think it's Eddie Izard who's got a quote from one of his standup gigs, where he talks about the Etch A Sketch end of the world, like, do you remember the Etcha sketch where you turn upside down? You shake it, and it just somehow felt a lot like that and that it didn't necessarily have to be a bad thing. but just everything suddenly was cancelled. All of my career was suddenly, a stop was put to that well had just trained to be a teacher. And he had to put a stop to that. Freddie was about to join the school, you know, we were getting him ready to go to his first year of school, and he couldn't go. So it was like, suddenly everything was thrown in the air.
But then, the way we managed to deal with that was just thinking about it as like a new opportunity to draw a different picture, a different picture. So yeah.
Lauren Fenton 15:31
And how was it when Sylva was born? So you you knew some things but what was going on? And how did you cope with that at the time?
Camilla Cook 15:40
The time from when we flew back to the UK, when we flew back to the UK to when she was born, let's say three weeks after she was born, that was the most stressful point. And I actually think it is going to be the most stressful point of you know, the rest of our lives because it was really intense. From the 20 week scan. It was a bit tricky, but we were still kind of calm about it. And we didn't, we couldn't find out any information about what was going on until we got back to the UK anyway. But when we flew back from that period, until she came out of the NICU, which was three weeks after she was born was really, really stressful.
Because well, first of all, the quarantine hotel was a fun bit. We flew back to the UK and then had to stay in a quarantine hotel for 11 nights, which meant that we were basically stuck in a room apart from 15 minutes a day, when we were allowed out I was pretty pregnant, Freddie was three and I was just this kind of almost like funny, like a, like bad in a comedy way. It was just so extreme that we were able to laugh at it. And actually, you know what the conclusion that I'm, I've drawn from all of this is like the silver linings are there. Everywhere. We had as a little family of three, three and a half. Some of those times were actually really fun. And we just had, we had to really make an effort with Freddy and our family were really good and sent off stuff that everyday we had little parcel to open and it was a bit of Lego or is a bit of it was playdough or whatever.
So we just had this time together that we wouldn't otherwise have had. I mean, some of it was really hard as well. But we had food delivered to us, you know, we decided we had to pretend we were on a slow boat from Tanzania, and that it would take 11 days to get back anyway. And we'd have a little cabin anyway. And we just talked about what the journey would be like, otherwise, if we weren't on a boat. Anyway, so then I wasn't registered with the NHS. So that was a whole crazy headache, where I couldn't get an appointment. I didn't know what to do. Luckily, my my health insurance was still going from my work. So we had to get a private health clinic, go into a darkened room and be told that yeah, probably our babies, you know, we're going to be going to be pretty poorly and have to have an amniocentesis. It was all just completely insane and extremely stressful.
We didn't have anywhere to live. Having said that. My sister was an absolute hero. She has a little Airbnb, the end of her garden, which is actually it's a room with a little bathroom. And she basically does have that for what ended up being six months. Wow. So it was during that time was pretty crazy. And then somebody recommended me, woman who is amazing midwife, she has a private midwife. And again, we were able to get that on insurance and she completely changed everything. And she taught she worked with us from probably about 30 weeks until Sylva was born. And after that, and she was literally the lifeline. She was incredible. Her name is Angie and she was literally an angel she can more amazing for us. And I'm somebody who needs to fix problems. And so, you know, I was going out I got like counselling straightaway. I found Angie, I was like trying to read things and find out about things. And actually, the only beneficial thing was that that really was was Angie. And she came and hung out with us a lot and got to know Freddy and got to know my family. And we're just so helpful.
Lauren Fenton 19:24
When Sylva was born, were there surprises then you obviously knew about some of the things that she had going on with the club fee and being small. But what was apparent when she was born? Was that a shock to you? Were there additional diagnoses that were given early on?
Camilla Cook 19:41
Yes, so they were worried about her size, so she was 2.2 kilogrammes when she was born. And then there were various things going on. And actually oh I'd forgotten one thing we'd gone to London to have a detailed scan of her heart and her heart is unusual, in the sense that it has she has a bilateral superior vena cava, basically two veins where there should be one. And then she has a hole in her heart as well. So we knew that there was going to be heart issues. There were other various things on the scan that they couldn't quite make out. They were worried about her hips. Yeah, so they're just loads of things. And then when she was born, she had low blood sugar. And they were a bit worried about that. I you know, what, as I sort of implied before, a lot of it, I can't remember,
Lauren Fenton 20:29
Do you think it was a cope coping mechanism.. I feel like I'm a bit like that I can't remember the details from back then because I had to sort of blank out there was so much information and so much trauma that you're going through that you just kind of have to it's some of it is gone. And that's maybe okay.
Camilla Cook 20:48
I don't know if this is the same for you. Like, the speculation that was going on then hasn't necessarily translated into anything that we need to worry about. So one thing that helped me massively, and I can't say this enough, was that we were given a really scary hypothesis about the genetic conditions you might have by a geneticist in London. He was great. One of the top geneticists. Really nice woman. And I actually asked her to be specific about what her concerns were. Mistake number one. Mistake number two, was googling it on the way home, oh, my gosh, oh,
Lauren Fenton 21:26
no,
Camilla Cook 21:27
it was such a mistake, because she didn't have she doesn't have this thing. And, you know, there was just an idea. And all of the tests came back negative for everything. So there was just no point in going through the real trauma and some of the images that I saw on some of the things that I read are still in my head. And I since then, genuinely haven't Googled anything to do with Sylva, really not one thing.
Lauren Fenton 21:51
Wow!
Rina Teslica 21:52
I feel like I'm listening to my story I have on my son, similar to yours. Yeah. 20 week scan, heart condition, we thought you'd have a hole in the heart, she'd be going straight to the NICU for surgery, none of that shit happened. And then when she was born, there was like talks of different syndromes. And and that was one particular one that they were floating about, that I heard randomly that I then did loads of research that traumatised me. And now I don't want to know anything about her actual syndrome, like I just I don't care.
Flip from before, where you're like, I want to know everything.
Camilla Cook 22:27
That's it. And if I think about my own state of mind, in that period I described, when it was like quarantine hotel, when there was nothing else to think about, what are we doing, we're watching daytime TV and playing with Lego like there wasn't, of course, I was just worrying more and more to when, I don't know, because the doctors don't have any clue about what's going on. You know, there's no point in speculating, and that I was so stressed during that time. And since I've stopped thinking or, or as you're saying, Rina, like, we stop thinking about it, and stop trying to project into the future and trying to imagine what everything's going to be like and just living today, then I just feel a lot happier. It's like, I lived in a Buddhist country for three years, and I never quite got the idea of meditation, like it took having disabled came to realise it actually, it's really, it's really valuable just trying to drown out the noise of everything else and just enjoy what's right here in front of you. So
Lauren Fenton 23:25
Not to add noise back into that picture. But um, I guess how was Will, and you're so because your son was Freddie was three, right when you came back. So I guess we're all very aware of the potential impacts on a broader family of having a child who's sick or got a lot of medical things going on. And there's a lot of unknowns. But your three year old had also gone through Well, having a sibling, that's a big deal, new person who's going to get as much attention as, as they are potentially more in the early days, moving from his home, or what he felt was his home, the global pandemic and all that came with that. And then Sylva arrives. And obviously your concerns are going to be off the charts and you're there in hospital running tests and stuff. How was that for your son and for your husband?
Camilla Cook 24:19
I feel really lucky. I feel really, really lucky. Just a quick word about Will, my husband, we're we've just proven to be such a good team, like, so lucky. He just puts in hard work. I put in hard work. And we've balanced it out. But we just we've got this dynamic where if one of us has a wobble, the other one is able to be really strong. Let's hope that we never have a wobble at the same time because that could be some sort of catastrophy. We're quite good at sort of knowing what the other one needs and he used to take Freddie away. So one massive part of the stressful period was the was the pumping. Did you guys do? Were you pumping?
Lauren Fenton 25:07
Yes, yes, yeah.
Camilla Cook 25:10
Super fun with a really nice bras and a really nice, really nice machine noise, you know, that sort of noise that kind of seeps into your subconscious and is there forever.
Rina Teslica 25:19
I still think sometimes I can hear it. When I think about pumping, I swear to God.
Camilla Cook 25:26
Definitely. It's deeply there. Everything that goes along with that, you know, he, Will was just really good at recognising that he was never understood, would never understand what it was to sit with a machine attached to your tits in the middle of the night, having woken yourself up for a machine, like it's one thing doing that for a baby, he's thirsty. But for machines, you've got to keep going. And all the hormones are going crazy. And like, you know, he just he knew he was never going to understand it. But what he did understand was I needed support. And so he took Fred and they did loads of stuff like, we were staying at my sister's. And again, back to being lucky, we got Freddie into a little nursery, so he had something going on there. But Will used to take Freddie down the lane for walks. And they had this whole story about how these ducks had been magically, magically turned into these alpacas, because one day they saw some ducks. And then the next day, they saw some alpacas and it was like what's going on, it will turn into this magical thing and a lot of kind of storytelling, a lot of a lot of playing. And then giving funny and me time as well. Where would Windsor was born, take her away and just we sort of divided things up and aim to give him as much attention as we could. Whilst, like, recognising, as you said, Lauren, he's not going to he was never going to get as much attention and Sylva at that time. And I thought we're gonna be with her, but trying to compensate, but also getting him used to the fact that that's, that is just the reality, like, we were not we really were keen not to spoil him.
And that was, that was a bit difficult, especially because, you know, family wanted to do whatever they could and he was being given presents left, right and centre, like, you know, as a sort of compensation. We were trying to keep him involved in conversations and keep asking him how he was and you know, three it was really hard for him to articulate it and he struggled with sleep again, you know, regression and all that stuff. But we got we got through and family were amazing. Our family were absolutely incredible. Special Special shout out to my parents in law, who are heroes, really incredible, really involved really just chilled and reliable and dependable. And they stepped up they came in stayed nearby the hospital when silver was born, they were had ready and willing, I could go in every day, and he didn't feel left behind. And yeah, we're just I couldn't be more grateful for, for my the support network network that we had coming back. And it was having not really had it in Tanzania and a hands on way. That was this, like, lovely flash of beauty. Like that was part of
Rina Teslica 28:14
like a warm, big warm hug.
Camilla Cook 28:16
Exactly. And they were genuinely delighted to help because they hadn't seen much of Friday, and they really wanted to be around and same with my sister and her children and her husband. And yeah, that was just we were really surrounded by love. And it was it was incredible. And that's that's why we're we're fine. It's been that and lovely things have come out of it that we didn't anticipate at all, because, of course I was there like really thinking, you go through, I don't need to tell you guys but that morning of what you thought was going to be and I had my little girl who I've always wanted to have a daughter and we had our perfect family we're going to happen and then suddenly wasn't what we'd imagined and going through that at the same time as being conscious of how much we were relying on everyone else was quite hard because I think for me personally I was not necessarily repressing it. I was conscious of not draining everybody else have what they have their energy by talking a lot about it. And on reflection, I think there's maybe something that maybe it's like deep trauma now that will come out at some point but I was I did feel under a lot of pressure trying to balance managing it for us and our family.
Whilst also being conscious we were living in my sister's house. I mean, she was cooking us meals every day and she really just took us in for six months. And her amazing husband and he's disabled so that was just you know, there's more and more layers to it. My sister just was just recovering from breast cancer herself. And just you know, it was this kind of crazy time.
Lauren Fenton 29:51
Wow. Did you miss because it you say managing it and you know, you referred earlier as well to know You know, that feeling of this is not what I imagined potentially as but you? I guess, alongside that your life had completely turned upside down in terms of your job and where you were living? Did you miss Tanzania? Or was there any grief for that side of your life that had obviously taken a, a very different time?
Camilla Cook 30:22
I mean, yeah, I used to go to the beach every day!
Lauren Fenton 30:26
sounds lovely.
Camilla Cook 30:28
And this again, was this, the other like, narrative that was going on in my head was how privileged I was and how I shouldn't be, you know, I've got a baby girl, lots of people can't even get pregnant. So I didn't let myself I wasn't letting myself process it emotionally, I think very much. Because yeah, we've gone from this absolute paradise situation where everything was was easy. Like, you know, I had my job, my career was going where I wanted it to. I really enjoyed the school that I taught, I really love my colleagues, I miss my friends I... God I really miss my friends. Still, I haven't seen any of them since apart from two of them came to, to Brighton. And that was amazing. But you know, these best friends suddenly just poof, gone, didn't even get to see them to say goodbye, my students, I didn't say bye to my students. And that was really sad. Yeah, and a lot of it a lot of the lifestyle I miss little things that we joked about, you know, packing up and moving from one country to another is a massive headache. And we just basically didn't do that. So we sort of our lovely friends packed some of this precious stuff, and the rest we just sold and made a bit of money out of it. You know, it doesn't, it didn't matter. It's amazing, what it's taught us about what kind of material objects just don't, like, don't really matter.
Lauren Fenton 31:43
Can we sort of fast forward a bit then. So you still haven't got a diagnosis for Sylva? What's that been? Like? Because you, you talk about not googling or not kind of overly fixating on that aspect was have have you? How's it been not having a diagnosis? And is that something that you've been pushing hard for?
Camilla Cook 32:05
It's been a really interesting experience. Because I kind of implied earlier that I am someone who likes to fix problems, and not knowing what the problem is, is, was initially kind of challenging, but now I actually wouldn't, I'm not that bothered, like, if anything, when we get a diagnosis, it will then mean that I have something to type into Google. And therefore I would, you know, the anxiety might rise a little bit. And we had it was, it was a weird one, because we were getting all these negative results. And that's a weird thing, like, actually hoping for diagnosis of something that you can name, even if it's something bad, so that you then have this you can make a plan. It's such a weird experience, when actually should be joyful, responses are coming back negative.
I think that very quickly, I we were confronted with the fact that you know, medical knowledge is limited, and that having gone through life thinking that everything is fixable, if I've got poorly, there was a medicine to mend whatever it was, you know, that's now been thrown out the window. And, you know, we had it yet another weird thing was that the geneticist in London took the sample from my amnio to run whole genome sequencing, because I think it don't need just been allowed on the NHS or something that just was sent off. And then I don't know what's happened. She basically ghosted us completely. So since then,
Lauren Fenton 33:44
Oh God
Camilla Cook 33:46
Sylva's now two. That's over two years, not even a reply to an email. So we sort of gave up on that. And then our paediatrician in Brighton was like, yeah, maybe we should do our own our own one. So we have just redone that a couple of months ago. But I'm not really anxious for the result. I don't. In a way I'm slightly I'm anxious to get the result, if that makes sense. Yeah.
Lauren Fenton 34:09
How it might make you feel to have a result afterwards. It's really interesting because we conversely, Bea was diagnosed with 18q deletion, her chromosomal abnormality when she was two weeks old. So it was like, really early on when we weren't even expecting her to get diagnosed with anything. So we were just constantly told it's nothing. It's nothing all of these things that we've noticed about her this breathing episode and her time, her stint in NICU, it's not related to any I mean, it was our expectations were managed and completely the opposite direction. So it was a real shock that there was this slight label diagnosis.
But then recently, I was just thinking we had a Bea sees an endocrinologist, and she was talking about some characteristics that she's noticed in Bea that are similar to another patient of hers. And she suggested that we go and test for this Other genetic mutation, like I just like, Yeah, whatever, you know, kind of easy, breezy conversation. I wasn't really focused on it. And then I got a call from the geneticist at Great Ormond Street say, Yeah, we're booking you into this other run this other test. I'm just like, What the fuck? It's similar to you. It's kind of like Bea is Bea, and I'm not sure this is going to tell me anything that I need to know about her. And it's that thing of gosh, there's so many unknowns in the medical community. And I always feel like and it's no, you know, I think she's great, this endocrinologist. So it's no disrespect to her. But I do feel like this is like a medical curiosity to her like there's something academic that she's interested in, it's not really going to make any difference to the Bea or to her family, or? Yeah, I don't know, maybe I'm being overly dismissive. But it's really, I think what you've described in terms of not being really anxious to get a diagnosis is, is probably a very healthy thing. Because it's about it's about Sylva and who Sylva is. And actually, you don't need a set of criteria or a label to be comfortable with who your daughter is. Does that sound right?
Camilla Cook 36:13
Sounds exactly right. And actually, I feel quite proud about the fact that we both will, and I feel like that, like I didn't expect it. I'm quite proud of I think it's quite, it's evidence that we, we love her, and we don't need to know what the future holds.
Lauren Fenton 36:29
Yeah. But that's not to say that someone really desperate to get a diagnosis isn't, you know, doing that for the right reasons as well, because I, you know, there are definite pros to that, you know, in terms of opening doors, or, yeah, just getting understanding. But yeah,
Camilla Cook 36:44
If we get the diagnosis, and then we find out that we can help her with it, then we absolutely will be delighted about that. I think it's just that you know what it is, it's that I don't want to have this inevitable relationship with the medical profession, I don't want it to be that I'm trying to get something out of them, that they are not going to be able to give me because that creates stress. Like there's no way they have this incredible, vast knowledge that is so far removed from what I know. They will tell me what they can they will do what they can I do believe that as much as the NHS is stressed, I do really believe that they're wanting to help. So I kind of have just handed over responsibility for worrying about all of that stuff to the people who know, who are quick to worry about it. And absolutely those those parents can
I was just going to ask you, Lauren, like, if a minute ago, you implied that you were not necessarily that happy about the test going ahead? Would you ever ask for it not to happen? Like, I don't know, I'm in a bit of a conflict at the moment that whether I'm a bit too deferential to the doctors, and whether I just let them do their thing, and whether that there's a balance to be struck between the way that I trust them, but also the way that I should, as a parent, take some more responsibility. Yeah. I'm just slightly in denial. And I'm just hiding from reality like, and I had, how do you feel about if there was something you didn't want to happen? Would you be able to say no?
Lauren Fenton 38:19
Well, so Rina, is my guru on this because Rina is like, so good at pushing back. And we've talked about it a lot the things that she she takes control. And I think I am definitely, you know, take control in a lot of ways in life. But I am definitely also quite deferential to people who have a profession that I don't know anything about or say in the medical profession. But I think now, I would say no, I don't know if I want to say no, because I'm, you know, that's a discussion between my husband and I, I probably need to do a bit of research on this specific gene mutation to know whether I want to get it Bea tested or not. But I would definitely feel more comfortable these days saying no, I think it's a tricky one. Because, yeah, it comes back to I think, what difference is it going to make? And I think that you asking that question of yourself with your child, as you go through all of these appointments and medical interventions is really important.
Bea has a hearing loss, and she wears hearing aids, and she has a really good wearer hearing aids and that constantly the conversation comes back to like, would she have some sort of an implant of some description, not a cochlear implant, and there are different surgery options you could have, and we keep kind of coming back to what's the benefit? What actually, you know, she's a really good user of the aid now, like, is this going to massively improve her ability to hear and if not, then should we wait till she's older when she can have more autonomy, you know, more of a say in that or should we do it now? You know, I think I think it's good to question and not just take things on face value. And like I say, Rina is the best at pushing back and questioning, I need to get better at that.
Rina Teslica 40:08
I think for me because with Lua was so fragile when she was born, that and I was really young. So I didn't, I full on trusted the doctors to do what needed to be done to get her to a place where I could bring her home. That was like the main goal. But then I think we'd been burnt by things, and not necessarily massively bad. But you know, like she had a tracheostomy. And we still to this day, don't really understand why she needed to have a tracheostomy, which is such a life changing surgery. And that's then caused her to have more issues. And yes, it's got her to the point where like, she's happy, healthy, eating. It's like that balancing act. And I think once we got to that point where we were like, well, then why? What when nobody could answer the simple question of why does she need it? It got me thinking? Am I trusting these doctors to give her the best outcome? Or are we just taking the quick and easy route? So now I question everything all the time. If it's not beneficial for her. It's a no. And that's across the board with like therapies with professionals that don't really need to be involved in her life to anything I am much more. I lean more towards the No. And I need factual proof and real understanding before I agree to anything, which I think I can be that annoying parent, I think sometimes when I walk into a consultation refer him they're like, Oh, God, it's this one. She's gonna ask a million questions, and we've got to be on the game.
Camilla Cook 41:55
Yeah, but that is just yeah, that doesn't matter. Lua's the one that matters. And that's the thing I've got to get better at, I definitely, definitely need to. And one. One thing is the physios have given us a chair, a special chair for her. Which I don't really see why I don't really understand why. And I remember when they wheeled it out. And they were really pleased that they had managed to secure the funding for it. And they showed it to me, and there was someone there, who was literally a salesperson not trying to sell to us, but he was there showing all the features of this chair. And I was like what do you know, my I suddenly felt incredibly sad. And I didn't really understand my emotion, and I started crying. And they didn't know how to handle it. And I didn't know how to handle it. So I didn't know why I was feeling like that at all. It was just this it was just so medicalized. And it was, you know, there's not been any concern about her, she can sit up, you know, what is it this this chairs for? Maybe we need a chair and when she needs a chair, and when I understand that, this the need for the chair, then give me the chair was great, and how amazing. And I was sort of thinking like, initially I asked them to explain I just did it, it just feels like a big change. And I don't really understand why she needs it. She's sitting up in the just the IKEA antelope, you know, the one everyone has was sitting in it. So why does she need the special one and they they told me you know, you can get set her up and down and the chair sits in the corner of the room and I basically just bottled it because I just thought this is a really expensive chair and we've been given it and like we've got to feel grateful. And I reflect on that. And I feel a bit like I should really have vast a bit more. So hopefully I can absorb some of your, your
Lauren Fenton 43:36
it's not it's not too late.
Rina Teslica 43:38
I've said no to that chair. I think it's the one that goes up and down. And it's got the tray and it's got thing for the feet. Yeah. Yeah, like we had that same chair. I said no to it initially. And then I agreed to it because she needed it. It was similar. Lua's one is like wooden and then it had the thing that you pour on it goes down. And then like she outgrew it and we just like never used it. So I had this whole back and forth with her physio, they were like, No, keep it. She needs to be using it blah, blah, like, why, what, why? And I got them to take it away. And she now has like one of those like Bumbo like plasticky ones that will sit on like, on a normal chair. And I think there was like two things. I think when you see something that's so medical, it's a big shock and I think that's an issue that we probably have with ourselves I certainly had it where it's like this is to medical for me she doesn't she's not that medical, she doesn't need it. Then it's the acceptance that actually Yes, she does. And then it's the the like seeing because it's your child you see them more and you see how much they develop more so than a professional so you know when they're ready to move on and then it's that fight of she's outgrown it. She doesn't need that she's gone past that she needs something else. So it's a mixture of a lot and I think you have to really trust yourself because ultimately there's that saying: You know your child best? Like you know what's best for them? So
Camilla Cook 45:04
yeah, but then there is also the other flipside. So I'm thinking for myself, you know, in reflecting on is this just the easier route for us like we've had this conversation moving from the NG to the peg. And there is no doubt that Sylva was really struggling with reinsertion, which we were having to do every few days. So that was an easy win for her, we wouldn't have to shove a tube down her nose, often. And then we also think that and know that if she is able to feed overnight, and we can see it and she then has the day free, then that is the ultimate aim. And therefore it's worth working for. So we've come down on the side of it being good idea. But then I was thinking, hang on, is this so that I can sleep? Am I really wanting this for her? Because she can then it makes our life a bit easier? And again, it's kind of like question of right now she's had the peg She's She's vomiting to more than she was before. So it hasn't helped and I'm feeling like, oh my gosh, she's got a hole in her stomach, which we decided would go in and, you know, it's, it's this real conflict that you do have isn't in your own mind about what what is that you're so responsible for a child if they're responsible for a child anyway?
Lauren Fenton 46:18
I think your own life being easier is also valid, I think, yeah, that that is that has to come into it as well. Because if you get more sleep, you're going to be like, without sounding really cheesy, you're gonna be a better parent to Sylva and you know, I think it's, it's completely valid. You as parents having, you know, we could we could all kind of just be complete slaves to our children 24/7 We would completely burn ourselves out. It's that's not realistic. And it's not what's gonna be in their best interests longer term, because they need parents who have slept. And
Camilla Cook 46:55
yeah, you're right. And I remember your one of your first episodes, I think it was Genevieve who said that self care had become a much bigger priority for her. And that really resonated with me. And I've had that in my mind, because it doesn't come. It doesn't come that naturally. But it's really important, because I know that I'm better at everything. If I'm feeling good. I'm still like, definitely making bad decisions when it comes to, you know, exercise or loads of beers.
Rina Teslica 47:22
We know which one would be the one that we would pick, but
Lauren Fenton 47:28
I think I get both do a do run and then have a beer. So how is life how it's silver and family life now?
Camilla Cook 47:38
Life's really good. And it's, you know, some of it is really hard. And I'm also I'm conscious that we're in a nice little sweet spot that she's progressing. She's still teeny, weeny. She's way below the percentiles, whatever they are. I've tried on
Lauren Fenton 47:54
Percentiles schmentiles!
Camilla Cook 47:56
And we don't have any answers. You know, she's just now she's, she's been diagnosed as having a little bit of hearing loss. But she's stuck. She definitely can hear she's nonverbal. She's not making any signs of becoming a schmuck. She makes noises, which are hilarious and very sweet. We enjoy those. So she there's lots of enjoy about her. She actually isn't very hard work. Because she's just started crawling. We raise you're really happy about?
Lauren Fenton 48:23
Wow, that's amazing.
Camilla Cook 48:25
It's really good. And she has, yeah, she she's happy when she's happy. She's still vomiting a lot. That's just, you know, part of life. But yeah, we're conscious of the fact you know, other parents with kids similar age, are doing things that we can still do with her. And I am. We're sort of surprisingly happy. And I know that it may not last, it's kind of a weird, like trying to... knowing that things might get harder is something that I am constantly trying to not think about. Because right now, you know, we live in a lovely flat. We've got right in the middle of town, we go out to the beach, and we just bought one of those waggon and things that people have at festivals. And we just put the kids in loads of stuff and go like, yeah, look at the sea and just play and Freddie is super happy at school, fantastic school. And the lovely thing about the school is it in his class, there's a boy who's also got an undiagnosed syndrome, who they are absolutely brilliant with from what I've seen, and that's minimal, but it's been really lovely, reassuring thing that I can see Sylva's future and it's a supportive one. Brighton generally he's got loads of services, we definitely pick the right place to move to, you know, it's kind of it's kind of nice. It's really nice.
Lauren Fenton 49:42
We like a happy ending.
Rina Teslica 49:46
That's gorgeous.
Lauren Fenton 49:46
What do you think, been the most helpful thing to get you from like if you had to pick something from where you were in the initial stages of just rabbit in headlights dealing with everything that was going on to now what would be It's hard to pick one thing, I guess. But is there anything that stands out?
Camilla Cook 50:05
Just as cheesy as it is just remembering how lucky we are and feeling grateful for that that's been a huge one for me that there are so many, you know, count your blessings, that phrase that didn't really mean anything, but just really does now that there's so much to love about everything. And especially because everybody's struggling, like, it's, I don't know, unfortunately, everything's been turned upside down. And for many people because of cost of living, and that I don't know, the fact that we've got a little family unit. And we're all pretty happy as feels like quite a good thing and easy thing to enjoy. If that makes sense.
No Googling, as I already mentioned. We talk about things a lot, we play, we do a lot of playing, and having a silly time, seeing friends. Definitely enjoy being back in the UK. And again, it's because we, we haven't had we hadn't had that for the first five years of our marriage, we lived in Thailand. Now being back here, there's still a novelty about being here. You know, just even Amazon the fact I can get something from Amazon or I can go and get. We can go dancing to music that we actually like, or we can see me live music or our friends are just down the road. I don't know, there's so much that's quite novel still. And also, camping holidays. That is the thing. So we haven't we have no money extra extra money at all. So I did invest in a Bell tent, which was secondhand. And now that sounds like it's heaven, actually exploring the UK, we were jetting around all over the world before and, you know, especially because we shouldn't be doing that because of the climate crisis. Now it feels like we're just, it's serendipity. We now can't do it. But we actually really enjoying being in a field or a forest. And I don't know, just doing English things quite nice. Yeah.
Lauren Fenton 52:00
Do you think you'd ever travel again? Want to go abroad again, and work abroad?
Camilla Cook 52:05
Well, it's a good question. I love teaching the IB, which is the International Baccalaureate and not many schools teach it, you have it as part of the syllabus in the UK. And I really, really like it. Not that it's perfect, but it allows teachers to, especially English teachers, which is what I am to teach in a way that suits them and seats their students. And that's what I want to be doing most in the world and international schools are where it happens, where they choose that as their curriculum most.
So I think if we, if things settle down with Sylva, and we know we can manage it. Them Yeah, we will consider when Freddie is ready to go to secondary school. At that point, we might go to an international school, whether it's in Europe or further afield, it would have to depend on how Sylva's doing, but that's that would be really nice, because we'll got this teaching certificate. And he's an amazing teacher. And now he's back to copywriting. Because we can't afford to have him on a starter teacher's salary, you know. So that's, that's one of his streams that has been squashed a bit by the situation. So it'd be nice if we could go back to a good school where we were supported, I think we're sort of daydreaming about Scandinavia, where there's really good, like social care. That would be fun.
Lauren Fenton 53:25
I see an uprooting rerouting part two, we'll talk to you live from Scandinavia or something. That would be amazing. You kind of answered it. But if you think of yourself in that quarantine hotel, worrying about baby's future and everything that was going on and life is just in a complete spin. If you could give yourself some advice, or tell yourself how it was going to be okay, well, would you say?
Camilla Cook 53:53
First of all, reassure myself that all three of us would be and Sylva actually all four of us will be strong enough to handle it. We all of us have, like shown really good resilience, I think. And in the face of challenges, we've we've all of us overcome them. And that that in itself is a really valuable experience. Like, as a teacher, we talk a lot about grit and how you can how you can develop grit and perseverance and determination in students. And it's not easy to do, because you can't really manufacture challenges very easily as a teacher like right now, I'm just going to not give you everything you need to be a happy student. See how you get on. Like, that's not very ethical. So it's really hard to do that. And I think the benefits of overcoming challenges for all of us has been a real positive. And that yeah, knowing that we weren't all going to fall to pieces would have been nice.
And another thing is that Sylva just because she's disabled doesn't mean she isn't happy. I don't know. I just sort of imagine it was all this terrible catastrophe and she would be a really miserable person and you She's got a really naughty sense of humour. She's really, she finds things really enjoyable. And really, she's really happy. And that just because she's different from Freddie, it's doesn't mean that she's not as happy as him. Another thing is that I would love her as much as I love Freddy, because I don't know about you guys. But that was a tricky one. Like, I was suddenly thinking about, uh oh, am I gonna just put all of my hopes in this one boy? And how on earth is he able to, we'll be able to withstand that, you know, that's far too much to put on a person. And it's also such an toxic way to think about your kid. I don't know, it just that was I grappled with that for quite a long time. And I feel like we've passed that now. And yeah, just I don't know that. Ultimately, being disabled is not an irredeemable catastrophe, and that the world needs to change. This is such a cliched thing, but, you know, the fact that they just have disability pride, and we need to be working hard on on changing cultural views, I think and if I don't have time for it, like, you know, I hope sort of galvanise over what you guys are doing is great, you know, just sort of trying to educate people and, and make people feel that it's, it's not a disaster. It's just It's hugely challenging. It's knackering. It's hard, it's really emotionally draining.
It's also funny and heartwarming, and like it invokes pride. And it's sort of, I don't know, there's the flip side of that there's a light side to the dark. And that's the same, it just looks different with other kids. And this is what I'm doing. So far. My armchair activism is very minimal. I'm sort of following a lot of people on social media and just feeling super inspired by the the attempt to shift the narrative from, oh, dear support you while you're in a wheelchair, for example, to I'm in a wheelchair, deal with it, you know, that kind of thing. Over grows up in a world that shifts to to that, and I have hope, but it does require a lot of a lot of work. I think that's ultimately how I feel about...My conclusion is that there is hope and it's going to it's going to be a bit of hard work. Thank you for your podcast.
Lauren Fenton 57:29
Well thank you for sharing your story and beautiful. Yeah, it sounds like you're in a really good place. And I tell you when I'm next in Brighton, watch out, because I gotta be like messaging you that I'm coming down. Yeah, I would really love love to meet Sylva and in real life. She's gorgeous.
Rina Teslica 57:50
So to end the episode, as always, we're going to ask our guests Camilla. What her f**king normal is so Camilla. What is your f**king normal?
Camilla Cook 57:59
My fucking normal is being really pleased when my daughter vomits in front of a medical professional. Because they get to see that it isn't normal. It's not just reflux. Secondly, because I can immediately get the measure of them as a person. And I don't know about Yeah, I have very strong feelings towards medical professionals. I basically either loathe them or deeply fall in love with them. The way they handle her being sick is a good measure. Obviously. I wish that she isn't isn't puking everywhere. But also in a doctor's office. I don't have to clean it up. So it's a
Rina Teslica 58:40
win win. Win win.
Lauren Fenton 58:41
Yeah, triple win. I got it. I love the fact it's a barometer as well.
Rina Teslica 58:47
Amazing. Oh, well. Thank you so so much, Camilla Cook for being on our podcast. Yeah.
Camilla Cook 58:52
Thank you so much for having me. I really enjoy it. It's lovely to meet you both. Yeah.
Lauren Fenton 58:59
Thank you so much for listening to the fucking normal podcast. We love making this podcast.
Rina Teslica 59:05
Yes, we do.
Lauren Fenton 59:06
Haha 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 59:20
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 fkingnormal_podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 59:43
So thanks so much for listening all the way to the end. We'll see you next time.
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