[English] The story of ordinary people who became extraordinary parents [Cerebral palsy] - Thomas & Petra (Part 2)

The Hi there, I'm Loïc, the host of this podcast. Les frappés is a French word that refers to people doing wild things in sports, business and life. In this episode, I'm interviewing longtime friends Petra and Thomas, parents of Leo and Raph, twins who were born at just 26 weeks and were soon after diagnosed with cerebral policy, a group of movement disorders caused by damage to the developing brain. Parenting can be tough at times. Petra and Thomas had to learn to become parents while being under heavy stress on a daily basis because their children had to be put on oxygen to stay alive. Because all of a sudden they were on a non-stop mission to answer Raph and Leo's special needs. Because their relationship suffered from the many many sleepless nights that they regularly had to spend in emergency rooms. This is the story of Petra and Thomas, ordinary people who became extraordinary parents. To me, and I'm sure for many others who will discover them in this episode, they are unsung heroes, leaving examples of what resilience and love can accomplish. So sit back, relax, and enjoy the conversation, but be ready to be as much inspired as you'll be moved. ready set go so thomas and petra last time we um really glad to have you again last time we uh we had a very long conversation about i guess your life or you guys met um your super high um standards yeah uh jobs uh in a very special environment which is uh like a world-class casino we talked about the pregnancy and I guess I don't know if it's the right term in English but an expected turn of events with the pregnancy that led to Raph and Leo being born prematurely at 26 28 26 weeks which is for those of you who are not as good as me with math, 26 weeks, is six months and a half. So that's really, really early. And we also discussed the diagnosis. I mean, the fact that later on Leo and Raph were diagnosed with, is it severe brain damage? Cerebral palsy.

Loïc Cerebral palsy.

The Cerebral palsy, okay. Which, of course, led to, I mean, sort of special challenges with how they are able to develop and grow and enjoy their early years in life, I guess. So for anyone who's jumping on the episode right now, if you want to listen to that part, it's about two hours, if I remember well. You have the link in the description because we're going to do some spoiling here if you don't listen to that. So go listen to that one first and then come back here. and this episode is going to be focused on the now actually you know it's seven years later you've you guys I mean you you moved back I mean I'm not gonna spoil people but you triggered some big changes a few years ago I guess now you have some sort of routine or at least you have seven years of experiences on how to be parents with kids who have different needs so yeah I'm super curious I have a lot of questions but I guess first of all a very simple one is how are you doing today like you know in those days 2024 the best

Loïc it's the best period so far

The yeah we never been so happy in all in all aspects so glad we made the decision we got a good routine you mentioned but sport is a big part of it. If we don't have our, what, you're doing 12 hours a week now? Maybe. Safety? Yeah. I'm doing 14 to 16 and now it's going to increase a bit more. But yeah, it's definitely a need. A need to be pushing and feeling like you want to pass out at the gym.

Loïc It's very intensive now.

The Yeah.

Loïc I actually took a challenge because you know Thomas got a friend and they're doing working or workout together and it was a crazy intensive i mean they're doing 17 different sets a day seriously i had no idea no it's it's very intense if you see how he looks now it's very different so i i took a challenge and i joined them for January and it's intense. It's good though, I'm loving it. It's good. The kids are

The the best. They're the best, they're interacting, they're at this age where they're very sweet. I don't think all kids are sweet like this but they're getting to the point where they understand stuff, you can talk to them, you know it's not just they're crying and you don't know why and And it's pleasant with them. It's really nice. They're so funny. They're so happy. You cannot be around them and be miserable. So that's really, really good.

Loïc Yeah.

The Wow.

Loïc And they're super cuddly.

The Yeah, that helps. Well, I can tell you as a friend, I am so happy for you to hear that because I know that the road was bumpy to get there. that's the least we can say I guess but yeah so fantastic to hear that I wasn't expecting that to be the second first question but how do you guys manage because I had no idea you were doing so much sports during the week I mean I knew you were like exercising but I thought you know it's like maybe a few hours like three four hours a week when we came back we made the decision that we were going to be our own boss to control our lives and not we work around the work. We, you know, we live around the work. No, work is around our lives. So we drop the kids at school, we go to the gym and then the day starts, we're working.

Loïc Also, it helps that there's, it's not no season yet. So our season starts in April. So I guess the routine will change in April. For now, we're enjoying, you know?

The Okay. And so what is it you're doing now, business-wise?

Loïc We bought a company last year. And basically, we're doing gifts for seminars and for weddings. So it's based on tourist industry. And if someone comes to Provence and they want to give a basket, a gift for wedding.

The a coffret, a bag anything

Loïc we're making luxury gifts for guests

The we've got a range of homemade artisanal product and then we've got a range of wine and other from suppliers

Loïc from suppliers

The so it's a very seasonal

Loïc basically it's the season is April till October

The yeah April to October okay wow so you guys are entrepreneurs now

Loïc yeah

The yeah and hopefully soon I can start something as well or

Loïc good projects coming up

The it's always good to have projects we'll keep you up to date what's happening don't worry nice excellent so we mentioned the the bumpy road to to get where you are now um and of course i don't remember like every um uh every occurrence when uh it got tough for you guys but i remember i mean from you know all those years we we we've been friends uh especially thomas um when you were sharing like you know difficult times when i when i have when i reflect back i'm just like amazed at how you guys managed to keep it up together especially as a couple because i'm a father now since two years and it's tough sometimes right but i only have one kid uh she was not premature she was not on oxygen for like weeks in order to survive she doesn't need like special care you know physio or whatever she's she just needs me and my wife and it's already sometimes tough so i mean for me for the couple for you know in general parenting is is beautiful but it's also tough so how i mean how did you guys manage to stay such a strong beautiful couple over those years oh wow that was

Loïc I guess that's a big question it is a big question because I don't know how much I want to share we would like to share but definitely I mean like any kids are changing dynamics of the relationship I read somewhere the couples the childless couples actually last longer because kids are often you know

The you you you know you know a couple anymore your family so the whole the whole dynamic is changed

Loïc and um and i don't know i mean we were not happy for a very long time oh jesus no i mean yes we

The we didn't i mean to be happy you have to live we didn't really live we survived so that was

Loïc one problem one of the you know it was it was actually really really bad that um the kids were priority like like honestly if if we were childless and the relationship was so bad as it was with children we would never make it the only reason why we made it was because we were so occupied with kids that you didn't have time to to solve the relationship basically kids were priority and you were focusing on everything what needs to be done around them. But we knew it's not good between us.

The It's a bit of a vicious circle because if the kids were not there I don't think it wouldn't be bad. So, you know, it's the change of dynamics and sharing and talking and self-improvement. That's what saved us.

Loïc Self-improvement. And do you know very, very big change happened around when there were about two or three, when we started with the gentle parenting? That changed dynamic between us as well. Because basically we came to the point where kids were, you know, both of us are coming from families where punishment was normal, sort of raising up kids, right? so obviously you're doing what you see at home now um it was not working it was not working at all you know you could you could uh you could i don't want to say beat because we were not beating the kids were you not really beating three years old but you know slapping did not solve anything shouting did not solve anything basically we we there was no way of you know i was just really getting angry and and i didn't like myself shouting and then um i started i started i downloaded tiktok and basically somehow i found some videos about gentle parenting and it just clicked and i'm saying you see i think it's going to work and basically yeah i'm not saying we're doing gentle parenting like 100 because some of it is very no it's personalized to our our kids

The it's personalized to our family some of it we take some of it we don't but uh yeah it's you

Loïc know we we're not permissive like i uh i i'm taking it as a we're going to explain to you and i i'm definitely there is there's definitely no there's definitely no beating and not even shouting other than i made me laugh um we were they still not used to us shouting at them like Thomas shouted at Raphael for something like during the lunch unexpectedly and he just screamed to make a point right and Raphael was so not used to it he actually burst out laughing and the soup went everywhere so like you can see like our reaction when if my parents did that I would be scared and he found it hilarious because basically

The nice try tomas nice try

Loïc like what was that so so you know talking normally um you know we were we were under a lot of stress because of the just because of not sleeping because of everything what was happening or you snapping at each other. So with gentle parenting, it started to reflect on us as well. We started more talking than snapping and being unpleasant. And we went through big change there. You had to change. You know how hard it is when child is upsetting you and you need to be calm. Like you need to change first and then you educate your child how you want them to be, right?

The So just basically it was three main points. Number one, we changed relationship with the kids and how gentle parenting changed us. Then we decided we've had enough of UK. We're not happy. We're moving. And then when we're here, we realize, well, we still need to do one last thing because just moving doesn't help. We actually need to change and decide we're going to be happy now. like enough with the like depressing and the stress and the just angry all the time for no reason we just made it let's be happy and that just clicked and I think that was it

Loïc it's very vague but okay

The I was about to ask how do you make that change can you really

Loïc decided to be happy now or yeah you can for me yeah it was yeah because basically it was um you know i i i told thomas if oh so we're sharing now we're sharing okay then i told thomas if if if our relationship is not going to improve in france we we finished i i we can't anymore and basically, there was one situation where I realized I'm really not happy. And he could see it. There was a situation, I'm not going to go into it, there was a situation where I froze in time and I realized I can't anymore. I don't want to. I'm done. I'm done because I'm really not happy in this in this marriage, in this relationship with the way how Thomas was, you know and then and it was really sub-serial situation

The it hit me at the same time I saw and I felt my way, I felt the same way she did but I also felt her way like it was just one of those things where you kind of, you don't talk but you read each other's mind and it was just like okay like now is the time where you change you'll be happy you're good to your wife and your kids you've got everything to be happy just stop being miserable thomas was not on a good place basically

Loïc i i feel like um you know i had my breakdown point and um which i didn't mention uh last time i had my breakdown and and where i had time to process what is happening because one thing is is to you living it but you're not really actually processing and realizing do you know what i mean so so i feel like thomas was in denial and he was just keeping everything inside for a very long time and it was affecting everything first he was not happy he was with uk with he was not happy in the relationship as well do you know what i mean it didn't mean he didn't love me but the situation was so difficult that it was just impossible and and it was affecting his way of thinking he was very negative and you know or often he was snapping at kids and basically the the uglier he was behaving to kids the more aggressive i was becoming to to him and and it was just one vicious circle and basically that i call it the revelation it was the most surreal thing basically i i just really like i knew that was that was my last point i am done and then i took him out and i said i'm done and he said you don't need to i know i know everything and then he said i'm going to change you know how many times you hear that and and basically but one one point about thomas what i would i really appreciate or you know i i went through quite few serious relationship and if i I can compare what no one ever did, Toma does, is he's really trying. You know, like when you tell him something, he really, really, really tries. And you can feel it genuinely. You don't know how long it takes, you know, maybe it's going to go back, but there is always you feel it's really trying. So I thought it's going to be okay. It's going to last, you know, few months, couple of months. but he was from the day the next day it was like how can you change mind of someone who is really negative with you you know like someone he always see glass half half empty and the next day he woke up and he was person he was completely different it was like yeah he was he appreciated it I mean it started slowly you know it's and um yeah the relationship with kids like he didn't know how to show love because he was never in that he didn't grow up in that environment it wasn't it wasn't for him something spontaneous to hug and kiss like he literally literally learned it like you you could see the effort at the beginning and now it's completely fine and actually you can see it on on kids how kids

The change relationship to thomas it's crazy that was the the reward basically you just kids are always mama mama mama cuddle cuddle cuddle mama kiss mama and you show them it was like not even few days i'm not gonna say day one but straight away it was more there was a progress you showed them love and straight away they they the way they respond that was just the best

Loïc feeling in the world like he never he never then you feel dumb you're like why was i so well i know why but why did i not come out of that anger and depression so yeah big big big big changes yeah yeah it was it was a hard work hard work behind us but it's so much better i'm still

The I'm still French. I still have my little friend here sometimes. But it's not... It's nothing.

Loïc It's nothing in comparison.

The And it's not with kids. It's not in a carpool. It's just, you know, bad drivers in France. That's a good one. I mean, you have something with drivers. Because I remember every single time we were chatting when you were in the UK. If you were, you know, on the commute... there was something for a driver next question wow that's profound not sharing but sharing uh quite uh some big stuff she decided huh

Loïc well no because it was so you know it doesn't sound genuine like it was it was like when you're reading some yoga general like like people are listening what is he talking about like no you want to do interview you share i've got another one which i think it's um it's um how i had my own breakdown when you when you realize

The um you're mourning the life you're never gonna have okay that's not what i wanted to say but that's that's true as well that is true for me I've got this this friend of ours he he has a son with Tourette and he's autistic as well he's like 17 18 now yeah and his daughter was murdered on her 18th birthday so he's lived a dramatic life and so we've always been closer to him because of the the trauma and one thing he told us and i didn't accept it for a long time he said basically you need to deal with it because you have lost a life you're never gonna have like the life of going for your first bike ride with your kid when they're three or four skiing or you know like all the stuff like the first step like like it just happened all of that it's gone you're never gonna have it so you have to mourn that part of your life and you have to to to come to what do you say like um accept it yeah accept it you know this is this is the most

Loïc difficult having having kids with disability this is the most difficult part which which the acceptance you know because it's very it's very difficult to so you you knew we told you about or how we how we found out and then i said straight away when we were told um no i don't i don't accept it i i hear you but i didn't have kids to to be on wheelchair right and then so so you you you're dealing straight away we started with with looking for physiotherapy and then you're going through the physiotherapy and basically all all this time i'm having no i i know it's it's just a muscle and we can we can you know everyone will tell you they will they they will catch up right or the you you know you you're hoping you're doing so much physiotherapy they will catch up one time they're going to walk and they were saying yeah by by the age of three by the age of four you know and it's it's extended extended and i got to the point when they were about three three and a half years old and with with intense physiotherapy and everything what we were doing they were just not catching up and there was there was one one situation um when i was coming back home from physiotherapy in england um and they were just they were horrible they were horrible in the car they were they were crying they were you know they were often horrible actually they were not nice nice behaving kids when they were small and i think was it was madeira when they were i think when they were about four coming three and a half coming to four and i talked i talked to when we were at the physiotherapy i was talking to the field of physiotherapist and i'm saying listen what is your what is your projection honestly what do you think how what we into with them what how they're going to be and he said well i think rafael is going to be fine rafael is going to you know walk he will be fine but leo he's going to um he's going to have a support he will he will not walk without the support whether it will be welcome whether it will be kane um he he's not going to walk like us and this was first time for me when i had to accept that because and process it yes i was i was in denial the whole not denial like no it's just to shut off if if no i you know like we're pushing we're pushing it was so intensive you know going four times to slovakia for for for three weeks and and and it's just you put you put your whole life on hold for years you know and i say well surely if you if you if you're doing it's long enough it's going to be improvement they're going to walk right it's logical isn't it and and you're doing it and it's and the results are there but you know it's like uh like so small the progress the progress is there but it's so small so you know it's going to be very long time and basically I was coming from the physio and they were horrible in the car and there was this one I lost it I lost it completely when I started to scream in the car, I stopped in the car just shut up I was screaming at them just be quiet I could not handle anymore that was when he told me what he thought and I knew I have to I have to go go i have to go holiday i have to go i cannot stay in the house it was it was difficult with thomas it was difficult with kids and i knew i'm going to go cuckoo i'm going to go crazy i have to go you know when you when you know you cannot you cannot anymore so that's what happened thomas came home and i'm saying listen i'm going to go to our manager i'm going to talk to her and i need emergency holiday i cannot stay in the house with you i cannot i'm done um and i went and it was amazing oh again the support of the managers incredible and and i just sat down and i'm saying listen i have to i need emergency holiday and she looked at me and she started crying and say you've got it i said you don't you don't need you don't need to know why and she said if you want to share you share but i'm i'm tell me how how long you want and you've got it you you know it's going to be i think they did it paid as well yeah uh so i went so i went to madeira for five days by myself and basically this was one of the toughest period in my whole life i swear where where you know i it was it was during the covet i was receiving some kind of like um like like uh i was calling with psychiatry some some yeah some psychology psychiatric phone call and and basically you know i had like about six sessions talking about and it was like you're talking about the past and it did help you open up a little bit but what is really missing on the market is psychologist for for parents with disabled kids you know like basically i was the most difficult part about it is like you don't have support from anyone like i turn to my i've got i've got good you know family background and i've got very good friends which they are for like 20 30 years i've got you know long relationship friends but but no one's got experience i'm saying how am i supposed to accept that my my i've got a handicapped child what am i like like the pressure the pressure i felt in my head i knew i'm going to i'm going to like i'm going to go crazy not like literally crazy you know we've got the skies of schizophrenia in the family and basically all my grandma and also my uncle they they they proper schizophrenic and they turned when they were 30 basically when you've got a lot of stress and you don't know you don't know how to deal with the stress the the sickness comes and i felt it first time in my life the pressure in my head i don't know how to deal with it so i had to go and basically what helped me so there was no there was no sessions there was no people to talk to i i didn't know what to do where to turn and what helped me were books so i said okay let me let me read about someone let me read about something similar right so i found one book um i found two books which really helped me and that first one was about this um about this it's a true story about the young teenager well i think he was 15 or maximum 18. He was a rugby player at school, coming from a sporty family, and he went to Portugal with his friends. He dived, not even from... And basically, he came out quadriplegic. And it's a very, very good book. It was very emotional. But the part which helped me from the whole book was you need to accept it so that was my you know he said a lot of people are just living through the life but they're not actually accepting the situation what happens now I said okay so this is the lesson from this book for me I need to accept but how you're going to accept and live with that I didn't I don't want to accept it how are you going to accept something which is i felt it like against my my whole existence like i it's impossible for me to accept it i cannot accept it because if i accept it i'm not going to push for physio i'm going to give up on on his progress you know and then i read another book and that would be three hours and that book that book was was actually even even more traumatizing and it was about again true story about some now woman in her 40s or 50s and she went through her whole life without knowing she had a cerebral palsy she was she was born in whatever 50s and her parents never told her about she was she was um slightly on the spectrum of autistic and she she had the cerebral policy but her her disability was very hidden she had just a slight um bad movements with the hands so or and something with the leg so she remembered she she used to do some physio when she was small but her parents never actually accepted it they were just pushing her and they were comparing her look why are you not doing this why you know and and i found myself doing the same what her parents were doing to her and she was blaming them she was blaming them for for not accepting her disability that it made her life so much more difficult and and that part i didn't even finish the book because i i i got from that book everything what i needed that part scared me even more than having a disabled child it's having disabled child which when he grows up he's going to tell you off for not being his support but being being just you know for not accepting who he is and making his life more miserable that was it like that that that's that's the biggest nightmare come true when when your child is is is tells you you actually you know you made my words miss my life miserable because because you cannot accept the reality so voila voila wow do you remember

The the name the titles of those books by any chance we can discuss that later maybe maybe if you do we can put that we'll text it to you yeah i'll put that in the i'm sure i've got it on kindle download this one yeah wow so what were your questions so my question um oh yeah i guess initially the question was how did you guys manage i mean that's a very broad uh question for a seven year uh seven years period especially with the context you had to face so yeah i mean to be honest i don't even know what to say it's so deep what you shared it's no but i really have no idea and honestly i guess thomas um i i told you that several times but i absolutely have no idea how it's humanly possible to be as resilient as you were because again that's not something you decided to do you know some a lot of the time i interview people um who decided to go on i don't know a very tough race or a challenging change of life and most of the times it's um uh it's a very short-term stuff you know when you prepare for a race i mean yes you can be training like 12 14 16 30 hours a week but if it's for one race or you know that it's for, I don't know, 10 years in your life because you're going to be an Olympian athlete and then it's over, that's something, you know, but that's not your case. You did not decide, of course, the situation, I mean, the condition of Leo and a half and also that's something that you can't really control that much, as you said, Petra, you know, there is a reality and yes, you fight for it, but there is so much stuff that I'm not, that you cannot control, you can influence, but you cannot control.

Loïc Nothing you can control. Yeah.

The I mean, I guess there is you, what you guys did. You control what you control. You change what you control, which is yourself and your perception, the way you want to behave. But that's the part that is super impressive to me. And I guess that's going to be super impressive for a lot of people. Like, how did you manage to go through all of that, come out better people better parents in spite of all the changes it's honestly it's fucking inspiring it's insane there was not really many options to be fair yeah but that's your point of view I mean what are you gonna do what are like you gonna just give up like you don't have you give up and you run away what do you do? you just it's your family, you stick to it

Loïc I don't know, it's not like you never thought about it I certainly did I certainly

The there's a difference between thinking and doing it's just not who we are

Loïc it's true because I had a meeting with friends after 25 years from school and and um there was one guy and he he asked well yeah well how is your life and then you just unload on him no no he knew he knew they knew from facebook but but i was saying you know i was just like oh it's horrible and basically i didn't want this and i was very negative about everything and he says so all right so why don't you so what would you like i don't want i like i don't want i don't want kids like this and so also give them adoption so what but no so you see so you don't really want it do you you you know you're whinging but but when it comes down to it you you you cannot can you even though it was horrible and tough and they were nasty but still like no that's not who you

The You know, you've compared, you know, many times, and I've said this before, but the level of what you can handle, you always think, oh, this is awful. And then something more and worse comes up, and you can handle it. And basically, you don't know what you can handle until it happens to you and you just handle it.

Loïc No.

The And that's the thing, you know. when your child has got a stomach bug, when he's got like 41 temperature, you're panicking and you go hospital and that's awful. And I don't want anyone to do that. It's awful. But to you, that's the worst that happened to you and your child. But maybe tomorrow, God forbid, you know, it does happen to a lot of parents out there. We know even the worst. That's the thing. Like we've got it pretty easy now. it wasn't it wasn't hard but we didn't have it wasn't hard it wasn't it wasn't easy but it wasn't as hard as it could have been like our neighbors from the the hospital they had to have heart surgery at two weeks old they were one kilo not even that they were 600 grams and and there is yeah you just look at it and just think do you know what we're gonna be okay yeah when you

Loïc it's just the physiotherapy puts you in the perspective you see cases which are there is one case vegetable

The with the trachostomies

Loïc and epilepsies and I'm saying Jesus I'm happy I mean still guys

The before we move on to the next topic to me you are unsung heroes of you know like true inspiring parents that everyone should know the story about because yes of course there is always someone who's having a toughest time than you but and maybe i'm biased because i know you but when you have people like you in your circle i mean again honestly it really pushes you to just you know go through any sort of challenge and shut your mouth and move on because you guys set the example. Thank you. I don't think I ever told you that live, so that's the opportunity now. We're sharing tomorrow. But moving on. So you guys said that today you have a sort of routine. There is a lot of sports involved in that. What is the situation for the kids? In which sections they are at school? What do they do in terms of activities because they seem pretty pretty active they they are extremely active so they have two sessions a week of physiotherapy which is neurological physiotherapy in france it's not just massage physiotherapy it's actually active so that's very good they have ergotherapy, which is I don't know in English. Soft motoric skills. Yeah, soft motoric skill. So what's the difference between the two? Between physio and to handle stuff with the hands. Writing for school? Yeah, and stuff to do with the everyday lives. So the physiotherapy is more walking, and the rest is about how to eat nicely, how to write, if you can write and stuff like that. They also go to echitherapy which is basically physiotherapy on the horses with a sort of the psychologist to be honest she's interacting with kids and animals to help them open up and discover themselves so it's a bit of both physical and psychological they go judo nice so that's that's lovely

Loïc once a week

The and they're doing very well everything is on the floor on the knees but they're doing very well and they're so happy they're well integrated in the club the first time was a little bit like what are those kids doing here but now every parent is coming to me like wow this is so nice I'm sorry I felt that way at the beginning but now I can see it's so good and it's even good for my kids you were being judged

Loïc because Leo is moving only on so Rafael can walk but Leo is only on his force and it's not even proper force how you imagine. It's basically...

The It's a frog leap on your knees.

Loïc Yeah, it's a kind of shuffling and, you know...

The Yeah.

Loïc So he's obviously very disabled and you are being judged. Like, what are you doing?

The No, that's okay. Because then it's the first impression and then they come along and they're actually... They're very good.

Loïc Yeah. And then they find out, well, wow, like at the end of the year, they said wow this was such a good decision like we can see the amount of progress boys did in this

The in this you know two semesters so that's the physical part they also go swimming we're trying to do swimming but in the winter with the sickness we letting go a little bit but they do try to swim they're not there yet but with the floaters they're very good raf can almost swim without and then we do try to do physiotherapy ourselves you know when we go shopping we take the two walkers in the shop and it's like a whole mission it's like we're going to train of two trolleys and two kids with the the walkers so that's pretty much it we we do have some splints to put at home and stand as a home to help to to put leo standing up and then at school they're on the first year of primary school and they are way way ahead i mean so many parents say this but listen they're seven years old they can multiply they can divide they can do the the move of so many numbers up to i think cube of nine i think they go up to. They see shape in space and multiplication. They've got a brain. They're learning to do the Rubik's Cube. It's just like I think the fact that we speak three languages at home help to wire the brain in some different way to be honest. I really do think they've got a different brain and also maybe the fact that there is a part of the brain scarred or damaged I don't know if it's damaged but there was hemorrhage so there might be a scar on it maybe other parts of the brain develop which is why they like this they're not speaking perfectly in any of the three languages but they speak free language I remember in some instances where they would start a sentence in like French put some English and then you know some words I'm like wow what is that I don't understand. And then, yeah, but what you said also, I think you sent some video, but years ago, so you were still in the UK, where you would ask them like, you know, 24 times, you know, I don't know, 12 or something, and they would answer. And I was like, holy shit, let me check that. You know, and I would need to take my iPhone and open the calculator app. And I was like, wow, he's right. And it took him like five seconds. So that was absolutely impressive.

Loïc They're very intelligent. They learn alphabet spelling from YouTube. They learn everything by themselves from YouTube. The addition, they knew multiplication before addition. They learn the tables. And it's just, oh, okay.

The So they did that on their own. Yeah. Because I thought it was you guys with the casino background where you have to do math.

Loïc No, no, no, no.

The That is YouTube. We actually bought them a calculator because they were always asking. And sometimes you just say, well, just take the calculator and you find out for yourself. And so many times when we're doing physio, one kid is doing physio and the other one is on his little tablet and he's doing math calculation. Sudoku. Yeah, or Sudoku or like, yeah. No, it's good. Wow. And they were liked at school. that's very impressive they go a little welcome committee every morning where one kid takes the bags one kid takes Leo and pushes him and no it's lovely so Leo goes to school with the wheelchair yeah and Raph with the

Loïc nothing

The wow okay he's got splints yeah so that keeps his ankle at a 90 degree approximately so he's not tiptoeing which is the first sign of cerebral palsy when they tiptoe. So he's working much better with the splints.

Loïc Yeah, he's more stable.

The Yeah. That's impressive. So they can actually... Do they have like... I don't know what's the term, but people supporting them, I mean, helping them at school? Yeah. Leo. Leo has one, yes. And Raf is on his own the whole day.

Loïc The eight. Yeah, but they're in the same class. They're sitting next to each other.

The Yeah, it's... You know, they...

Loïc You don't need so much for Rafael.

The Raf?

Loïc No.

The rough unless it's like putting a jacket putting a shoes yeah he's fine so the the lady she helps him when okay even the teacher will help him yeah like come on no but what what i have to say i'm

Loïc very impressed in france with with the people treating disability i mean it's cool not not not in general because you go shopping and it's completely different story but um how well they were received and accepted, whether it was in Maternelle or now in Sepe. You can see it's coming from parents and the generation is changing. Oh, it's changed.

The Like I was so afraid of Leo being bullied and he's like the mascot, like the kids. Some kids are actually jealous of how popular he is. You know, it's incredible.

Loïc But they're very lovely though. they're very even when when they had the they had the seventh birthday party now 22nd of december and we had kids coming over and there was one uh like all the sisters she was like in

The send something like that he was four five years old though yeah four years four years and and she

Loïc said i love them because they just they're so sweet they're really cuddling they they're extremely cuddly you know they're very affectionate and they're showing you you're getting just good feedback from adults. So it's impossible not to like them if you've got a child which is polite, they don't shout, they never tell you off. Basically, they're nice.

The That's amazing to hear. What are the... Because we are slowly getting up to the hour and I sort of promised you that we won't be as long as the last time, but what would be the... I don't know if there are projects or milestones that are coming ahead that you're really looking forward to? Be it, I don't know, first vacation, not in Slovakia together, for example. I absolutely have no idea, but is there anything coming ahead?

Loïc Is it family or personal?

The Yeah, any. Something that you're really looking forward to.

Loïc Well, listen. We're just happy. We've got plenty of projects, but you didn't want to go over an hour. You're asking wrong forms of people.

The No, but what we really need. I'm actually trying to give you some hint. I'm actually trying to have Thomas said that we're going to do a race with the kids, but I don't think he got it.

Loïc She knows that. No, but the interview.

The You have to say it in the interview, so it's public and then we really have to do it. Oh, yeah, sorry. So it's official. Well, listen, it hit me when I listened to the podcast about you and that company with a disabled wheelchair for outdoor. From Quebec in Canada, yeah. Yeah, the sport one. And I just thought, do you know what? That would be just great to just do a race with you because I know you love those challenges. And, you know, he's a 22-kilo kid, so it's going to be a challenge. Let me tell you. yeah no that's definitely one exciting project it's gonna be 2025 probably because i don't know how to do it before it's gonna be tough yeah but doing a race um yeah the the GR20 is not possible but maybe maybe a a simple marathon you know a simple marathon i would be happy well listen i just recorded an episode with a guy who lost both of his legs and his arm, like the entire arm at 9 years old. He's now 49. And he just brought 7 other amputees on GR20 last summer. So not the whole thing, 4 days, but the full experience. They were carrying 10, 12 and more kilos each with like his double amputees you know so amputees and yeah sleeping in the tents like the full stuff so never say never no no no my issue is not the physical part that's not a problem I'm up for anything the issue is you have to handle the kids being painful for the whole journey

Loïc mental part

The you know like we we we live from grandma it's only 100 miles away within five minutes are we there yet are we there yet like it's just it's tough mentally so marathon four hours the tablet we have to make him four hours like more than that you're gonna be running fast let me tell you well we give them a calculator each and you know it just yeah a tablet a calculator something no but definitely i really want to do it and i'm sure we'll get together and see how we can come up with a way to prepare and get to get to do that that would be great awesome so 2025 loic and i marathon with the kids and what's the brand of that uh uh is it crackers i don't remember yeah carcass carcass i think we have to look it up but i'm sure we can find some uh alternative from france to limit the like shipping cost and yeah but let's see okay so and uh so you mentioned family thomas just now uh what i mean how big and i guess we're gonna close almost on that but how big was it of a change for you guys to move from an environment in which you were actually on your own, right? No family in the UK to continental Europe. So you're still far from Slovakia, but I would assume it's easier now maybe to go there with the car than before. Yeah. And at least there is part of your family, Thomas, that is very, very close. So this change of environment, like socially speaking, how much of an impact it had on you and on the kids? It's a nice routine. it's nice to have you know the Sunday lunch

Loïc it's there's not one time when we don't go to grandma and we don't appreciate you know I've been listening about every Sunday there was a Sunday and it's like look my family is having lunch at grandma I was listening to that for nine years look it's Sunday and now we you know now we're there

The and we appreciate it family is underrated once you don't have it you miss it and we really do appreciate

Loïc you know you've got cousins which they close and they're not in touch in any family it's not just like Thomas family you've got people because you live together you grow up together and even in your adulthood you're still together and you don't appreciate it. Us being away from family for 12 and 18 years, my God, I'm not going to miss Sunday lunch in the grand month. Do you know what I mean? Like I want to be there.

The No, but not later than yesterday. My cousin just came to have a little game with the kids on the Wii. Little stuff like that you never do when we were in the UK. so it's stuff you just take for granted so now family was it was a big part sunshine, south of France, family

Loïc everything, everything together the not working nights massive, there's not one morning when I have a perfect night sleep and I don't wake up appreciating oh my god I'm so happy that was such a good sleep I'm just grateful I wasn't sleeping for five years for kids, for all my adulthood, all my jobs were during the night. So I never actually had a job where I didn't need to work a night shift. So it's just amazing. We're eating well, we're exercising. It's everything. Everything turned completely.

The That's amazing. That's incredible to hear. again so happy for you guys and uh well i guess that's the perfect uh conclusion uh to finish on a super positive note would there be any sort of message i mean again that's a broad question but that you would like to share as uh as your conclusion to this uh conversation

Loïc i mean i think conclusion from this interview or the main reason why we're doing this interview if there is someone like us who are not having support and who are not surrounded with people with disabilities, parents, it's different to be disabled and it's different to be a parent of a disabled child. And they want to approach us or we would be... I think this is the point of this interview. why we're doing it's if someone wants to approach us we would be happy yeah it's even if they don't

The approach us just share yeah just talk and share and and accept it it doesn't mean you give up just this is your situation make it the best you can and there is a way every situation is different but there is always a way and and you can always be happy like the the parents we saw in in in slovakia when we go there i just look at them and i just think how are they happy and they are

Loïc they are happy so yes i think that's the acceptance if you can if you can something feel from those families it's it's the love for those kids like like you you can generally feel the love of parents for those kids and yeah the acceptance like the extra sweet I don't know, I think having disabilities, giving even more

The it's bringing out the best out of people

Loïc yeah

The and we've discussed it before but the best people and the most mentally tough people they come from a very tough background very big trauma, something you know yeah yeah alright wow well I can't thank you enough Petra and Thomas for everything you shared on the podcast I am absolutely sure that this will be a super inspiring episode for anyone who's gonna listen to it whatever the situation and I do hope that it will reach some people who you know are facing some tough situations maybe like yours or or different but at least that especially to those people it would be you know the the little spark of energy that uh that is what they need to at least have a better day they are not alone they are not alone yeah they're not alone thank you very much and uh i guess uh well i hope uh we'll We'll see each other soon enough in like for real in this or here. Yeah. All right. Thank you, Loic.

Loïc Thank you, Loic.

The Thanks for listening to this conversation until the end. If you were inspired by this episode, please share it around you. Also, if you want to contact Thomas and Petra, you can send me an email at elo.lesfrappets.com and I'll put you in touch. Thank you. Thank you. Thank you. Thank you.