Episode 8: How being a carer changes you forever

When you've seen your child almost die numerous times and you've been living on your nerves for years, your priorities change.

You change. Forever.

Friendships lapse and new friendships form - forged through common hardships.

In this episode of Let's Take Care, mums Jane and Melissa discuss how handling their daughters' illnesses has shaped them.

The two friends explain how trauma has changed their take on life - but they wouldn't have it any other way.

In their usual warm and witty way, Mel and Jane's love and compassion shines through as they talk about their experiences and offer support for other parents of children and young people with disabilities. 

https://www.bftf.org.uk/

Email us at: letstakecare@bftf.org.uk

#DisabilityAwareness #ChronicIllness #HiddenDisability #SENDParent #AdditionalNeeds #SpecialNeedsParent #DisabilityCommunity #InclusiveFamilies #CarersUK

Transcript

Speaker 1: 00:05
We were really close, but I had to compartmentalise my father's death because I was so focused on my daughter's life.

Speaker 1: 00:14
I remember just standing in that playground thinking, I don't fit in here. And I just looked around and I thought, none of these families are going through three medical appointments a week, dealing with the child's pain levels and trying to feed them. You know, you're worried that she just can't talk.

Speaker: 00:32
Raising a child with profound disabilities can be extremely challenging. As well as medical, physical, and educational needs. Getting the help and support you're entitled to is frustrating and exhausting. I'm Jane Holmes. And I'm Melissa Paulden.

Speaker 1: 00:47
We've been caring for our daughters for over 20 years, helping them to lead hugely successful lives despite the barriers faced living in a society where the needs of disabled people are often pushed down by the system that fails to meet their needs. We set up the charity building for the future, which has helped hundreds of families. As parents, we made some mistakes along the way and learnt a lot.

Speaker: 01:07
We've been tired, burnt out, broke, ignored, and isolated, yet understandably expected to keep going by a society unaware of our struggle. Our new podcast, Let's Take Care, is our way of helping other carers of disabled children feel less alone and more equipped to cope with the realities of care that nobody talks about. In each episode, we'll talk about the emotional and mental weight of lifelong care, what it's like to fight the service providers constantly, and how to survive practically, emotionally, and physically.

Speaker 1: 01:37
We'll be sharing what we wish we had known 20 years ago, and we'll be hoping to make you laugh along the way as well. Let's Take Care, the new podcast brought to you by the charity Building for the Future for families and carers of people with disabilities.

Speaker: 01:52
Hello, my name is Jane Holmes. Welcome to Let's Take Care. This episode, we want to start off by reading a piece of writing that a lady, a mother of a special needs child, has written that's been doing the rounds on um on social media and it provoked a lot of thought um between Melissa and me. So her name is Crystal Anderson, and she says, I don't feel things the way most people do anymore, and I'm done apologising for that. When you spend over a decade parenting

Speaker: 02:24
 a medically complex child, your nervous system rewires itself, crisis becomes normal, adrenaline becomes the background noise, calm in chaos becomes a requirement, not a personality trait. I can function in an ERs, emergency rooms, trauma bay without falling apart, I can absorb devastating information and still make the next decision. I can compartmentalize fear because I have to. So no, I don't have the capacity to be emotionally invested in gossip or passive aggressive friend drama or who unfollowed who. That doesn't make me heartless, it means my threshold is different. When you've watched your child fight for their life for fourteen years, your definition of problem shifts permanently. Some of you call that detached, some of you call it intimidating, but what it actually is is perspective. I've seen what real emergency looks like. I've sat in rooms where outcomes weren't guaranteed. I have lived in fight or flight so long that relax feels unnatural. So if I don't react the way you expect, if I don't gasp at the right moments, if I seem unaffected by things that rock your world, understand this. It's not because I don't feel, it's because I felt too much for too long. And if surviving my child's medical trauma cost me the ability to fit neatly into social circles, that's a trade I would make every single time. If you know, you know, and if you don't, I genuinely hope you never have to. If you're living in this space too, quietly, steadily, holding everything together, you don't have to explain yourself here. But if this resonates, I'd love to know I'm not the only one.

Speaker 1: 03:58
It's so powerful. I mean standing ovation for that woman for speaking that truth.

Speaker: 04:04
Um and yes, it does resonate.

Speaker 1: 04:06
And it probably she probab was probably quite exhausted after realising all of that and then writing it down. Yeah. She's probably like, wow, this everything that we go through and been through. Yeah. But I'm so glad she's put those words out there because she's articulated it better, you know, than I could. Yeah. And it's just made me really reflective of my life and how I've handled myself, how I handle myself now, the way I conduct things and my thoughts. And it's intense though, it's intense, but that's because our life is intense, isn't it? Indeed, indeed is. And you know, living within a crisis, that's kind of like our baseline, isn't it? We're always really we're always on, we're always ready. And our nervous system is always in survival mode. I mean, we've talked a lot about this before. But because of that, our sense of self has completely shifted, our personality has re-moulded itself without us realizing exactly as as that lady said, you know. Um I'd be interested to know how far down the line she is, because we're 25 years of 28. She says over a decade, probably in between 10 and 12, I'd say. She's having some time to process things, which is what we're doing now. It's the whole point of this podcast. We're looking back and kind of wondering what we did right, what we did wrong, and hopefully listeners out there are learning from our stories and our mistakes

Speaker 1: 05:32
 and our successes. Um when did you kind of first notice that maybe you weren't who you were meant to be, or like other people, or did you feel, you know, at any time that you were different?

Speaker: 05:46
Um, well, I mean, we my daughter Kitty had a really difficult start. Um so she she was in hospital for three months after she was born, and I I think it was probably at that point that I sort of crossed over, if you like, into being the parent I expected or or or thought I was going to be, um, into the parent that I had to be. And things do take on a different perspective really quickly.

Speaker 2: 06:13
Yeah.

Speaker: 06:14
And you do prioritize, you know, obviously you prioritize your child, but you but the the trauma that the disability or or or living the what the not it's not so much the child, uh it's certainly not the child, and it's but it's not so much the disability, it's managing all the crises crises that go with it that um that uh I think make you feel um that you you are constantly firefighting um and and give you that whole new perspective and you've just put things in proportion in a way that you never have had to do before. And things that are you see are devastating for other people are not so devastating for you because you think, well, uh you know, I've I've watched my child nearly die, um in my case hundreds of times, and um you go into sort of free-fall state, you know, then they're back, or you know, eventually they recover or whatever. But you know, living with deep trauma like that, yeah. I mean, you're not going to sweat the small stuff anymore. Even when my my father died, I mean, when when around the time that my father was in the final stages of life, Kitty started for the first time with her really, really painful um muscle spasms. So it's like it starts in her neck. You know, sometimes when you yawn and and you get a spasm that goes across from your neck to your ear to your head, starts like that, and eventually um it takes over her whole her whole body, and she is in agony and pouring with sweat and unable to communicate, sleep. Um, and that went on for about four days, and it was sheer hell on earth um for all three of us. Um took it away any few times they they didn't know what to do. Um, and anyway, we were living through that, and and my father died, and I I just had to compartmentalise that. I mean, I adored my father and we were really close, but I had to compartmentalise my father's death because I was so focused on on my daughter's life, you know. Such a terrible reality though, isn't it? People were saying to me, Well, but your daughter's not well, but your father's died. I said, I know, but but I I can deal with that later. I can't deal with this later. And I know I shocked some family members that at that point, but that was it. I I, you know, um, yes, I was devastated that my father had died, but of course I couldn't deal with it at that point, you know, and and that's why, because I was dealing with something more extreme.

Speaker 1: 08:42
Uh-huh.

Speaker: 08:43
Even more extreme.

Speaker 1: 08:44
Gosh, it's so tough, isn't it?

Speaker: 08:46
Yeah, it's horrible. It was horrible.

Speaker 1: 08:48
I think people who have been through a trauma or a tragedy or a medical episode or or anything, you know, you can have kind of therapy afterwards, post-traumatic stress therapy. But for us, it just kind of rolls and rolls and rolls and rolls, and we can there's no time to take a breath and process what's just happening, you just have to move along. It's really tough, isn't it? Do you feel like we as special needs parents, parents of disabled young people, is it right or is it wrong the way that we are? Like we could we don't sweat the small stuff like you were saying, we don't get involved in gossip, we don't, you know, uh get involved in trivial stuff because we've got kind of really big stuff on our mind all the time. So it sounds like we're being kind of superior in a way when we're not, but we don't have time to get involved in the little things in life anymore.

Speaker: 09:38
Um and and some sometimes um I mean, yeah, I mean I I don't think it it sort of fulfills me. Sometimes nowadays I do, you know, obviously I've got friends who um who do talk about you know the small stuff and and I can relatively recently you know uh get into it if you like. It doesn't it's not something that I find particularly fulfilling, but I'm better at it now than I was. I mean I I I'm saying better at it because I also think it's important to reach people and you know I I I know I he really hear what you're saying about superiority,

Speaker: 10:16
 but you have to be careful that your experiences aren't creating a distance between you and other people as far as you can. So you can you can talk to people you can find common ground with most people. And I think you know, when you when there is that distance created that it probably perhaps does come across as superiority to some people, or you've lived a life that's so much more difficult than mine, therefore, you know, um I I I I can't talk to you. But I think it's really important to break that down. We are still normal people, and we are we we all still do, you know, um buy shampoo and you know, look at clothes on the internet and things. So we would still do that. It may not be it's not everything for us, and it's not something that we would ever use as a point of competition or anything superficial like that. But um, yeah, I think we can chit-chat to people, but I I find it easier as I've gone on when I was younger, when Kitty was young, and it was just firefighting. I had no time for it. I just had no, I had no headspace and no time for it at all. It was wake up, you know, get her up, do the day, go back to go to bed. I mean, you know, and that was it. Exhausted. So I think I did lose friends or friends drifted off, the the more superficial friends who I had found quite good fun. Um, because you know, I certainly have enjoyed gossip and talking about makeup and things in the past. I think they probably did drift off because there was nothing, there was no common ground. But now I think, well, it'd be nice to see them again for a coffee, you know.

Speaker 1: 11:44
I had a chat with myself when my daughter started school. She was a a mainstream school with a unit for disabled children, so she got support. But she was um, oh I think it was reception class, and I just had a chat with myself because I stood in the playground and I just looked around and I thought,

Speaker 1: 12:00
 none of these families are going through three medical appointments a week, dealing with your child's pain levels, um, trying to feed them. You know, you're worried that she she just can't talk. How's she gonna thrive at school and survive? All those worries went out the window because she did fine anyway. But I remember just standing in that playground thinking, I just I don't fit in here, I don't I don't see myself friends with any of these people, and then an another little voice on the other shoulder said, pick one friend and go from there. And I had a choice. Um, there was one lady who would talk and talk and talk to me about her impending divorce, and I was like, I can't take this burden on. I don't, I you know, I don't I want to make a friend, but I don't have the capacity to take on that kind of support, you know. I just want someone to have a coffee with and you know, someone who's going to be invested in my child and and creating a friendship with my child. And luckily, I picked the right person, it was another person who was, you know, treating me as kind of normal and just another parent, and you know, that that luckily forged a lifelong friendship for me and for my daughter. But yeah, that's what I had to do. I had to say, right, here is the situation. This is how you survive this school system. You need to assimilate, you don't feel like you fit in, but you need to pick one friend. So yeah, in a way, that's compartmentalizing as well, isn't it? I'm quite I've learned to do that. That's a survival technique. It's like, how do I get through today? By putting that thing in a box, by putting that thing over there.

Speaker: 13:35
Yeah.

Speaker 1: 13:36
I guess that was a good decision and a bad decision or a bad pattern of mine is being really impatient with people. Super impatient. And I kind of speak my mind as well. So I think it's good though. A really recent example. As you know, unfortunately, we an another a mum of ours, a friend, lost her daughter quite recently, and it's just awful. So, you know, heart goes out to her. Um, what a wonderful, wonderful mother she is, and an incredible daughter she raised. On the day of the funeral, I was in I am in a chat group to do with uh one of my daughter's friends' weddings. And we were talking about Hindu, and there's maybe ten girls in there, and they are a similar age to the daughter that our friend lost. And they were talking about things that just really got on my nerves, and they were being rude, and they were being entitled, and they were saying, Oh, I can't afford this. And when when you when is the Hindu gonna be booked? And where's the whole thing? It was just trivial stuff, and they started snapping at each other and snapping at the the young woman who was organizing the Hindu. Just crazy trivial stuff, and I just went for them all. Do you know how ungrateful you sound? I was in the wrong, of course. Everybody took a deep breath, everybody came for me in the group. But I'm just thinking, you girls have life and you don't realise it. You have choices, you have health, you have you're worrying about money that you have. You know, you worry someone said, I'm saving for a house, so I need to know how much this Hindu's gonna cost. Wow, lucky you! You get to live and you get to save for a mortgage, and that's where I'm coming from. And I think I'm not gonna change, because that's me, but it is probably a little bit I need to tone it down a little bit, you know.

Speaker: 15:35
Do you feel it's I mean, you know, I think and I took this for a long time and thought it for a long time, but having a disabled child and all the highs and lows, I mean you know, we have higher highs and lower lows than than other parents, and we see things that other parents never see. So we sort of have a a perspective that that the average Joe doesn't have. Yeah. Do you regard that as a privilege? A privilege. That perspective, you know. I mean, I because I think I do now. I mean, I I I certainly went through a period of time of feeling quite well, obviously, I mean, definitely felt hard done by it a lot of the time, and especially when I'm younger, but I think I've got to the point now where I feel our depth of understanding of the world, of our values,

Speaker: 16:20
 the perspective that it's given me is is is a gift. Um, I mean I'm it it it was a lot of you know pain and agony um to get there. Uh-huh. But I I've come out, I've come through thinking actually um I have an understanding of the world that I think other people don't have. Maybe I'm just being a Pollyanna and kidding myself, but I definitely feel I've got a an understanding that I I certainly wouldn't have had without Kitty. Yeah, and I and I feel grateful for that.

Speaker 1: 16:51
Um somebody asked me recently what was your experience of disability before you had your daughter? And I I couldn't think. I had no reference point. I had no I think there was one young girl in a Sunday school situation. I remember when I was about six, but well life was different back then in the 1980s, 1970s. You know, disability was kind of still kept a bit hush hush and a bit separate and not in life wasn't as inclusive as it is now, so we didn't have that many experiences, but yeah, I I I I didn't, and so you just uh I was just kind of trusting my gut when Tia was born about how to go about life, you know? Yeah. But yeah, I do s I do see it as a privilege. It's an absolute privilege to be her parent, her mum, and be on this journey with her. Yeah. Um you know, we we've always said I wouldn't have it any other way.

Speaker: 17:47
No, and if if if dealing with all that goes with her disability means you get to be that girl's woman's mother, it it's worth it, right? And I I think, you know, and I I keep I keep saying this and keep repeating it, it's not the child or the young person in our case or the disability even, it's everything that goes with it. It's the the the unnecessary fighting, uh, it's a bureaucracy, it's a form filling, it's the feeling that you've got to somehow be administrative about your child's life all the time, it's really difficult, and that could be made so much, so much easier. It's not them that that make it difficult, you know. So to be that young woman's mother, for me, it's it's worth all the pain that the service providers put us through. Honestly. I mean, that's you know, it's it's um she's worth more than worth it. It's more than worth it. I just want to be the mother to that soul, you know, and I'm so I'm so grateful and I feel very, very lucky to have been definitely that chosen, you know, if that's the right word. Yeah. My husband would roll his eyes if he heard me say that. But I feel I feel like that. I I was chosen to be her mother, and I I feel very privileged.

Speaker 1: 19:03
Do you feel like uh looking back, people should have told you more often that you were doing an amazing job? Because I was having this interesting conversation at a work uh forum with a networking thing with people in corporate events who are really senior in city banks and law firms and insurance. And I've always looked up to them and thought, wow, you're such a voice in the industry, you're so successful at managing all these budgets and multi-million pound events. And we were talking about imposter syndrome, and they all said how terrified they are every day of what they do and how they live, and they've got incredible anxiety.

Speaker 1: 19:40
 Am I doing the right thing? And that the space that we were in on that day, you know, people were saying, What you're doing an amazing job, and you need that peer-to-peer kind of um evaluation peer-to-peer. That's I think that's the that's the crucial thing, isn't it? Other people, the average Jane, Joe, feels that um they don't know what they're doing, or they're doing a bad job, or they're stuck in a certain pattern. Did we feel that kind of imposter syndrome? I don't think we did. I think we had time to a fire, aren't you? But also, would it have like my point is would it have helped our ongoing trauma, our ongoing worries and anxiety if people just said every now and again, You're doing a great job.

Speaker: 20:24
For me, um, I mean, people people occasionally said it, and you know, you get the oh, you're amazing, I don't know how you do it, and you just think, Oh shut up. Number one, I have no choice, and I you know, and and number two, you don't really know what you're saying. And and but but now I think, oh, that's really sweet, that was meant really well, and you know, I'm I'm not so sort of acutely stressed as I was, and so I find it easier. But the best, the best, the compliments, I mean you know and other people would say you're doing a great job, and I'd say, Well, thank you very much. I think to myself, Well, thank you very much, but actually you don't know what it's like. But but when you say peer-to-peer, that's it. When you tell me I'm doing a great job, I think, okay, brilliant. I know you know, because people who really get it, um, telling you that you're doing a good job, that means something. But I've been told it more. I think I mean I think we probably don't tell each other. I mean, not talking about just you and me, but as as a community of of parents of disabled children, I'm not sure we probably tell each other enough because I think I think we need to start that. We need to start a movement. Yeah, because we are all doing an amazing job, all of us. And you know, we all know how hard it is, but we are we're so sort of you know, treading water all the time that it's difficult to even consider how it is for other people. But I think we need to try, you know, as I've got older, as Kitty's got older and things have calmed down, touch would remain that way, and I understand how it all works now and so on, and I can see the sun again. Um, I do think, you know, lit thinking about how it is for other people um who are also raising disabled children or or caring for young disabled adults, whatever, try and put ourselves in their shoes. Because now as I talk to people who have become friends, you know, I look at their lives and I just think, gosh, you know, wow, they are really, really doing amazing stuff here. You know, but we yeah, and I I think you're right, we do need to start talking about it more. But get the balance right. Yeah. Even my mum would say, oh you're doing a great job and I'd think, you don't know no idea. You know, which is unfair because she was, you know, she spent a lot of time worrying about us.

Speaker 1: 22:33
Yeah, of course.

Speaker: 22:34
But you know, didn't it didn't quite hit the spot because she didn't actually get it. Even my own mum who was really involved, you know.

Speaker 1: 22:41
Just going back to what I was saying, that sometimes peer-to-peer another parent of a disabled child can be too much. Talking about it too much so that's what I mean by striking the balance. Never switching off. So I remember we were at a a sports event and I was happy my daughter's happy because that was her environment and another mum you know in the in the kind of schools network came over to me and said oh I hear you're having struggles with must have been sats or something like that. We had a big thing at the school they weren't gonna put my daughter through to do the sats because they just couldn't they they didn't want to risk anything you know or she's disabled she might not get her sats. She did by the way she got flying colours we but we had to fight for it. Crazy. But this parent said to me how's that fight going and we were it was the weekend we were at a sports event it was a happy day and she wanted to know about a problem an ongoing issue that was probably keeping me awake at the time you know someone judging and disrespecting my daughter but she didn't have to bring it up on that occasion and she didn't have to obsess about it and talk about it. And when I said something back to her and I can't remember what the answer was she then went full on into you need to contact you know legal you need to do this you need to and I just said to her stop we'll talk about this on Monday I just want to be here and enjoy this. Yeah yeah this day this this event you know so there's some parents who don't ever switch off and you need to kind

Speaker 1: 24:10
 of like I said strike that balance and not everything is going to be a huge issue not everything has to blow up into a big issue.

Speaker: 24:18
Yeah people feel it feels like they're just giving you more work and piling on more pressure and and guilt tripping a bit because you know this is what you need to do you need to do this you need to do that and you should do the other and you think actually I I got up this morning I had a really bad night you know my daughter's been you know whatever I don't have the the mental bandwidth to take on what your suggestions are and you're not you you you you you have missed that so that's not you know supportive basically absolutely I was polite I wasn't impatient or rude by the way if you're wondering I was probably a bit curt don't talk about this right now you know but yeah those those are things well you know that we were talking about about friendships changing friendships with other mums and and dads with disabled kids and friendships with friends who don't have disabled children that's all kind of they change don't they? They do they do it everything evolves um and I've I've I think when when Kitty was a was a s was a baby I was completely convinced that none of our friends would want to be our friends anymore because you know it was all too difficult for everybody and I was going to be necessarily a taker for a while and not being able to give and all that kind of worry. Makes you feel guilty doesn't it yes I think I did yeah and I but I just couldn't and that was it you know and I mean I think probably you know a a handful of friends did slither away at that point and I used the word slither on purpose. They slithered away like snakes. But I was really wrong about most of them and you know old friends from school really stepped forward for example and people who knew me really well but I soon got to the point where I had a group of female friends in London who I used to go out with you know regularly when I lived there and then obviously had Kitty and I carried on going up to London you know to have these nights out because I thought it was important. Everyone was telling me it was important. Go and have an evening out with your friends it's important and I can remember you know getting ready to go and that was all that felt quite exciting almost reclaiming a bit of my old life and then I get there and I'd have a couple of glasses of wine and every single time I would just start crying and crying and crying and crying and crying and I can remember them it was just a sort of let down you know after after having lots of wine and being out of the environment I think it was you know I sort of the mask was off if you like and um I can remember them just sort of not really knowing how to handle it and really would prefer to start talking about you know makeup and clothes again boys you know holidays all that kind of thing and I had lost interest in that level of life I I I wasn't able to relate to it at all but I remember you know one of my friends saying to me look you know I'm getting really fed up of this now and I I just dropped it. I never went yeah because I just thought I actually can't not do this. I can't not cry at the moment when I've had a couple glasses of wine and I'm away from home.

Speaker 1: 27:22
Were you crying because you know that's like when you're really busy and you you you work working and then you go on holiday and your immune system then goes oh yeah I think it was that it was a bit like that with your emotions.

Speaker: 27:35
Yes I guess yeah and also the the you know the the the diffs the distance between um who I had been and who I was now and then and I'm not I'm not friends with any of them anymore. Not there was never any bus stop or anything. It was just there was nothing in common anymore it felt like and we just drifted. Yeah I think if I passed one of them in the street now it would be nice to say hi and now I'd probably have a coffee and a giggle and a bit of a you know chat about things like you know but but but back then I just couldn't handle it.

Speaker 1: 28:07
I think it's because we're always trying to fix things we're always trying to fix our children and our situation because so much trauma and so many you know they came into this world you know and an accident happened and we need to repair that you we want to go back to that moment and try and fix something. So I think with our relationships and even the smallest interchange with somebody I am always looking for something I can get from them. What can I get from you that will then help my daughter at that exchange always had to be valuable to me. I couldn't just sit there and have a glass of wine with somebody and go la but you can now oh can now it's back then I was like gimme gimme gimme I need to know the latest thing that's gonna help um so I yeah I I would probably be the same and it's a distance between yours you know who you are who you become quite suddenly and and and that and the other people it it you feel very it's it's very lonely actually even though you're surrounded by people you just feel so different.

Speaker: 29:15
Yeah completely at the dance you know you feel yeah I

Speaker: 29:20
 just think I'm in the wrong pen here. I need to get out you know I need to go and find my tribe which unfortunately I did.

Speaker 1: 29:27
Yeah luckily that we we did find lots of amazing people to build a network with and a community with um but some people are still so deep in it they can't do that and they they can't come out of themselves and and access support because they're in the thick of it and I just wish we could reach out and help those people now.

Speaker: 29:48
I've noticed it with with through the charity work people feel like that when their children are young and then the children go to school and there's a bit more time a bit more headspace you know health issues often you know at least stabilize um because the medication and the treatment they've got it right and so on. And then they you know there's the whole sort of I don't know twelve years of schooling or whatever and then the young people who are then school leavers go home and there's nothing for them and those adult parents often have to give up careers because they have to supplement inadequate care packages. They then are at home with their child again and feeling it again you know that sense of isolation um I think it I think if you're not very careful that happens quite easily you know and I and I think those families are the ones I really want to try and reach out to I think I was quite aware I was very lucky I was very aware that that that could happen and it's very easy to think right I'm just going to shut the door and leave the big bad world out there we'll just be a nice cozy family and we'll all love each other and look after each other. It's very easy to to think that that would be the easiest thing to do but it's it's not and I think having carers I mean my daughter's funded through the health service that we have a lot of different carers that come through so there's that constant you know and obviously I'm working and running the charity and I'm talking to all of you guys. So you know that that's worked and but my husband's had to give up his job um you know to to coordinate our daughter's life to support her with her studies. He's found that really really difficult. So it's a case of you know making sure that we're not isolated um and we don't we we fight against that because it's a constant it feels like society puts a constant pressure on you to isolate yourself.

Speaker 1: 31:32
Yeah very and that that is it's you know that it's so much easier for service providers if you do so much cheaper you know so yeah it's it's um it's a constant um battle to keep pushing out there really I think if we if we could talk about maybe passing on some words of wisdom from now you know to parents listening in who might have the younger children about how to cope not cope better, but not always be in that switched on panic mode, crisis mode, survival mode situation and to exhale a bit and I mean I guess I would say don't always take everything seriously. Because every day I mean every day it's a serious situation and especially when you've got a medically complex child you know. But don't take everything else in life too seriously. I think that's what you can have a tendency to do that and um get kind of stuck in that kind of you think something bad's gonna happen all the time? Yes doom realising.

Speaker: 32:38
I think I also I think you know you it there's a danger especially at the beginning of this journey of thinking that you know the more you worry, the more you give time the more you neglect yourself etc etc the the better mother you are but actually the reverse is true. It's very um contradictory because you've you know your instinct is to give everything to your child and that will help them make them but help to make them better but you know you you actually have to pull back and look after yourself and make sure you get rest and time out in order to be that better carer. It it goes against the grain hugely but it's so important. So that would be my message to a young a younger family who is struggling you've got to take time out for yourself and practice self-care in order to be the best carer you can be it's not about sacrificing everything.

Speaker 1: 33:30
Absolutely yeah and I I would say um I support that 100% um looking back I wish I had taken moments to breathe taken moments to do more walking because walking is so healing you know out in outside 

Speaker 1: 33:46
there's some small things you can do you know to uh ground yourself and step outside of a problem step outside of a situation instead of being in it and throwing yourself all in it and getting so wrapped up in it.

Speaker: 33:59
Oh it's it's so dangerous. Yeah it's so dangerous and and it doesn't always have to be you as the mother you know it doesn't always have to be you. Share the burden and ask other people to step in and advocate for you. Better for everyone actually much better for everyone I would say this might be controversial as well but don't obsess over your child yeah yeah that's that's a really interesting observation actually we kind of I mean there's helicopter parenting and then is there a definition for us the way that we parent or parented parenting but we have we have to be where does you know healthy interest and healthy involvement stop and obsession start that's that line is is a really interesting thing to think about actually isn't it? Yeah you're right.

Speaker 1: 34:47
But when you obsess over your child whether it's something that you know they're not reaching a milestone you know they're not making friends or um you're worried about a situation with a local um service or provider or whatever it is you're not leaving any space for yourself or any other daily living any other no um just normal things to creep in and I think also you can you can raise quite selfish children as well because they know that you're hovering over them yeah like that and you're gonna fix all their problems and you're gonna yeah fight for them. And actually that's not normal parenting at all. But we feel like we have to do that.

Speaker: 35:32
So I think actually you reminded me of something because when Tia, your Tia was about six or seven and my daughter was about three they were at the same school weren't they for a short time and we were we would meet each other in the car park at the school and I remember Tia coming out and she got into trouble at some with something at school and she was in a cross mood and there'd been some there was some sort of tension going on um and she then gave you a bit of a hard time a very normal behaviour and I remember you saying that don't make it even worse you know something like that. It was not normal mum thing to say but I can remember thinking oh gosh you know how did you speak to a disabled child like that but by the time my daughter got to that age I was saying all of that and more but it's you know but I remember that I do remember thinking wow she's being really normal with Tia and a proper mum you know um and then it sort of dawned on me over the next few years that that was a requirement.

Speaker 1: 36:26
You have to do that.

Speaker: 36:28
So I think when when d when Kitty was three I was exactly the person that you that you you were describing and and then you know gradually learning from other parents is so important.

Speaker 1: 36:39
Absolutely we've been there we've done it we know how to survive yeah if you're listening to this while folding laundry or sitting in a hospital chair or hiding in your car for five minutes of quiet we've all been there. We see you and if your threshold has changed if your nervous system feels permanently on and you don't fit quite the way you used to you're not broken. You're adapted and adaptation is not weakness it's evidence of love and you don't have to explain yourself to anyone you don't have to soften your strength you don't have to pretend this isn't hard and if you're still standing still advocating still showing up still loving fiercely that is not small. Your nervous system might be tired your heart might be stretched your world might look different than you imagined but your capacity is extraordinary. And don't forget even extraordinary people need support so this space exists for you not to fix you but just to steady you.

Speaker: 37:40
If you're listening you're not alone let's take care if this resonates with you if anything we've said really chimes with how you're feeling um do drop us a line it'd be great to hear from you. Our email address is let's take care of one word at bftf.org.uk

Speaker: 38:01
 hope to hear from you