Cathy's story: Being Guy's Mum - the  joys and challenges of special needs parenting

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Welcome to the Loved Called Gifted Podcast.  This is your place to come for musings about spirituality, identity, and purpose.

I’m your host, Catherine Cowell.

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I am delighted to be joined by Cathy, would you like to introduce yourself, Cathy?

Cathy: I would, my name’s Cathy, I’m mum to 3 children and I teach drama for a living. Yep. 

CC: You’ve felt that it was important to share your journey of being the parent of a child with special needs, so that’s what we’re going to talk about, and I’m just wondering what it was at this point in your life that made you think, actually I’d really like to share my story?

Cathy: It began with an opportunity that I couldn’t take because of work, I was invited as a mother of a disabled child to be with other mothers and explore something with a dance artist a year ago, and conversation, and art, and I couldn’t commit because I have to work, and I realised that I have a real longing to go to this event, this 6 week course, and I wondered, what was I searching for? And I realised it is to tell my story. So I think it’s about now, and no other time other than now just because everything feels the right time.

CC: Do you have a sense of what it is about telling your story that feels important?

Cathy: I think an acknowledgement about how far we’ve come, yep. Often in our lives we’re always forward-facing, aren’t we? Trying to sometimes be in the moment but always looking forward and I find it’s really useful to maybe just press pause, have a little look back, and acknowledge just how far we have come. I say “we” – Guy, us as a family.

CC: I think it’s a really important story, having known you for a few years now. I can see some travel, just in the time that we’ve known one another. And I’m also really aware that actually, the journey of being the parent of children with special needs can feel quite lonely, it can feel quite different, and actually to have some voices out there, explaining what that’s like, I think is really, really precious. So I was really keen to hear your story too, so thank you ever so much. So if we go back to the beginning, you say you have 2 children who are older than Guy?

Cathy: Correct

CC: So how old were they when you started to think about maybe having another child?

Cathy: There’s a 3 year gap between all of the children. So we became pregnant with Guy at the geriatric age of 39. So we’d already had a boy, we’d already had a girl. Sometimes I wonder if I was just a bit greedy, but I just had a calling, a longing, knowing, that there was always room for one more at the table, so to speak. And we thought we’d give it until we were 40, and I got pregnant immediately, so I’ve always felt that our 3rd child, Guy, was meant to be. Yep.

CC: Yeah. But things didn’t quite work out as you were expecting. So what was the pregnancy like?

Cathy: Quite normal. People would remark, “goodness me!” y’know, “the size of your bump”. I’d take it as a bit off a compliment. Because I was quite small, but I’m running around after 2 other children. I felt perfectly well. And it was only in the 3rd trimester that the midwife measured me one day with the tape measure and said, “actually, you should be measuring significantly more. We are concerned about your baby’s growth. From now to the end of the pregnancy, we’re going to offer you extra scans. And because my previous babies were around the 8lb mark, I think they assume that any more children will be the same. They kept saying “he’s going to be –” well, I didn’t know he was going to be a boy – “the baby’s going to be small”, and I was not allowed a water birth, which was my hope, that’s what I had with the other two, and I was immediately put on high risk. But all of the scans, everything, there was nothing to suggest there was a problem, the placenta was doing it’s job. So I continued the pregnancy without really knowing anything, other than feeling secure that I was being looked at thoroughly.

CC: So there’s a sense of security that people are keeping an eye on things, but not really a sense that there actually might be something wrong.

Cathy: Correct.

CC: Yeah.

Cathy: Correct. I do remember the midwife saying that I cannot go a day over my due date. I cannot. Because if I do, there is a very, very high risk of having a stillbirth.

CC: Oh, gosh.

Cathy: My other 2 were all natural, they came when they were good and ready. With Guy, I had to be induced, and they said we have to do that, because of the danger.

CC: Yep. And had they kind of told you what that danger was?

Cathy: That memory’s quite blurry now, it was a very busy time, having 2 little kids as well in the mix. So, I can’t remember, is the truth. But I remember being quite frightened by it and thinking, “ok, I will be induced, I will do what you’re saying.”

CC: Yeah. Is that what happened?

Cathy: And so I was induced. Which, for anyone who’s been induced, it’s just not at all natural, and then I’m bouncing on a ball, and it’s all happening very, very quickly.

CC: So along comes Guy, and is there more that you want to say about the birth?

Cathy: Sure. So I’m bouncing on the ball, and induced labour, and Guy is born in very, very traumatic circumstances. We don’t know whether we’re having a boy or a girl. Guy is – the crash team are called, everyone rushes into the room, it’s like a scene that you’d see in a film, except I’m in the film. And our baby was born, I remember the midwife saying “Oh wow, it’s a boy! I really thought you were going to have a girl”, and then listening for that noise of the baby crying, and the noise never came. There was up to 8 minutes of him not breathing.

CC: Oh my goodness

Cathy: I’ve had lots of gas & air at this point, so my memory’s sharp, but blurred at the same time. The baby’s whisked away at this point, I remember clutching onto someone’s arm, this senior doctor, and asking him “tell me! Tell me he’s going to be ok! And tell me your name.” I was even thinking, “my gosh, if you save my baby, I’ll name him whatever your name is.” He got whisked away and I then was taken to him in a wheelchair to look at him in an incubator and attempt to breastfeed him, but I was very, very weak at this point. But by this point his Apgar score was very high, I was able to breastfeed him, and he was looking and behaving like a typical newborn baby. Time’s really just stood still at that moment, and as he’s then begun to open and flower, as he has, I’ve taken it a day, a moment, at a time. Even though I know what’s typical, because I’ve had 2 typically developing children before.

CC: Yep

Cathy: The horror which was his birth, I was just grateful that we were taking our child home.

CC: Yes, yeah, absolutely. So you’re home with Guy, and do you remember when you began to realise that he wasn’t growing up in the way you might have expected?

Cathy: Yes, so I would sit and I would breastfeed him and I always remember looking at the shape of his head, and feeling like it just felt unusual. But never really knowing how, or why. And he was a good baby, and I was quite a busy Mum, and I’d always remember when I’d look at a photograph that someone’d take of him, knowing that he wasn’t the world’s most beautiful baby, he looked a little bit misaligned, and he looked a little bit different, but never quite knowing how I felt about that. But loving him because I had him, and I was in that bubble.

CC: Yeah

Cathy: It was only really when the health visitor starts to speak about smiling, and other milestones that he was missing, that I began to open my eyes ever so slightly. But not fully, because, y’know, I’ve got a baby, and he’s home, and everything is as you think it’s supposed to go. I was a little bit ignorant really, but I did know, I did know there was something. But I didn’t know what.

CC: So was there a moment where you began to understand what was going on? Were there health professionals who were starting to tell you?

Cathy: So Guy would often be taken into hospital, numerous times, often in the middle of the night, with a viral-induced wheeze, but it would always be quite a panicked situation, because his throat would be tugging, his stomach would be moving much harder than it needs to and he’d always need oxygen. We’d go into hospital, and I’d lose count of how many times we did that. I was always told, “he’s not asthmatic, it’s just he’s suffering with his chest, he’ll grow out of it.” And it was on one of these visits that the doctor, Doctor Williams, noticed the shape of Guy’s head, and said “as well as treating the bronchiolitis, I’m going to ask for a CT scan because I’m suspecting that your son’s head is fused, and it shouldn't be fused, it should be open. The sutures don’t fuse until the baby’s brain is fully grown.” And I thought, “well, please let him be wrong. I know he’s the expert here, but surely…” And lo and behold, he came back and he said “yes, Guy’s head is prematurely fused, and he’s going to need a major operation in Birmingham Children’s Hospital, there’s only a window of time, an optimum window of time when this can be done. That’s Guy’s next journey.” So we’re then introduced to the team at Birmingham, who talk us through – I always struggle to pronounce it. But it’s called metopic stynostosis. [Transcriber’s note: it’s actually synostosis.] It’s the early fusing of the sutures. And I’m full of fear and having to drive Guy up the motorway and speak to people and I still almost think, “this can’t be right, it just can’t be right.” And I want to learn everything, I want to know about children who’ve had it before, I want to watch YouTube videos but I can’t because the procedure is so brutal. Eventually we get a date for Guy to go and have this operation, and I build myself and I prepare myself, and then literally 2 days before he’s due to go into Birmingham Children’s Hospital, he had one of these bronchiolitis episodes, and he ended up in hospital, but in Stoke hospital. And no child is going to go under anaesthetic when they are wheezing like he was. So it was cancelled. And I remember thinking, “how will I ever re-prepare for this?” 

CC: Gosh, yeah

Cathy: But we did. It was rescheduled, and it was rescheduled for the month of November, when he was 18 months old. And we went to Birmingham and he had this enormous procedure while we were away from him for about 6 hours. The advice they give you is to just keep yourself busy. And when we met the surgeons, when he eventually came out, the surgeons described the procedure as “perfect”. And I put all my faith and trust into the surgeons *tears up* because they’ve got my son’s life, and my son’s head.

CC: Yep

Cathy: *struggles to speak*

CC: Yeah

Cathy: And I’m looking at a photograph at the moment, which I haven’t looked at in a long time *tears up* of the scar, and funnily enough, it was, it might have been the end of October, actually. … It was the end of October because I remember we had Guy at home after the operation, and some children knocked on our door for trick or treat.

CC: Hmm.

Cathy: And I thought to myself, “they will think I’ve taken a marker pen and done a squiggly horrible line, like Frankenstein over my son’s head. That’s maybe what they’ll think.”

CC: Mmm

Cathy: Gosh, isn’t it funny how you have a memory that’s completely locked away. So in that moment of “please let this surgery be just perfect” and yes, those are the words that they used, I put all of my faith into God, and I felt in that moment that my prayers were answered.

CC: Yep

Cathy: And for that reason, I’ll never, ever turn my back away from my faith, because that’s what, that’s what gave me the strength.

CC: Yeah, so there was something about that sense that God had been in the midst of that and making sure that the surgery went well.

Cathy: Yeah

CC: Yeah

Cathy: Yeah. And there had to be something greater than, my husband put his faith in the surgeons. And I did as well, but I needed… in these moments, you reach, don’t you? You reach for whatever you have, and in the same moment when he was born, I remember that’s what I was asking for and screaming for in that moment as well.

CC: Yeah

Cathy: To God

CC: Yeah. Were you somebody who prayed and had an active faith before that?

Cathy: Erm, a bit watered down, really. I’ve always feel like when the going is hard, that’s where I’ve turned.

CC: Yep.

Cathy: And not necessarily when life is good to remember, really. But that was, Guy’s surgery was a turning point. And my faith has grown since then. And I acknowledge and check in with Him when things are going really good as well. I don’t want to just have a faith when I ask for things when I need it. I’m very thankful, daily, for who I am, the life I lead, the people I have around me.

CC: Yeah. So even though your faith wasn’t sort of a daily practice at that point, there was a strong sense that God was a refuge in the storm, if you like –

Cathy: Yes, yeah

CC:  – a place of safety.

Cathy: Yes

CC: Yeah. So what were the days and weeks like after Guy’s surgery?

Cathy: I remember speaking to a parent, actually, up at The Willows, where my other 2 children were at the time, and she said “oh gosh, I remember when your son had that surgery,” she said “I remember just seeing fear in your face.” I remember it was quite interesting her telling me what I looked like. I remember feeling incredibly protective. I felt like I probably used to offer far too much information to anyone. I want to justify, I want to tell his story, I want the world to be kind to him.

CC: Yeah

Cathy: I want everyone to love him, and also I want to see the potential in him, because I’ve been told that by having this surgery, the development delays which are already going on, could be, they could change after this surgery, so I placed a lot of faith and hope into seeing those changes. And yes the surgery was successful, Guy now has a skull which is as it is supposed to be, but we didn’t see these miraculous “oh my gosh, he’s finally talking!” “oh my gosh, he’s suddenly doing this!” Maybe it is there, but the trajectory is very, very slow. But I think I was expecting fireworks or something after. So afterwards life just continued, he was in nursery at the time and they just were so wonderful with him, and we just slowly, slowly continued, and it took up 1 year for the swelling of Guy’s head to finally, finally reduce.

CC: Gosh

Cathy: Mm. And it’s at that time he’s in nursery, when the nursery staff are noticing that he’s doing something quite strange with his eyes. And that was the next diagnosis, which turned into epilepsy.

CC: Right

Cathy: So we now know he’s epileptic, and pleased to say not full epilepsy where he’s on the floor convulsing. It was more absences. So both eyes would roll to the back of his head. Sort of taking him out of the room and back in the room. And that took us on another road, this time to a hospital in Manchester, where we get that explored, diagnosed and medicated.

CC: So how old was he at that point?

Cathy: The timeline is a little bit cloudy. But I’m going to say we’re about at 3 to 4. I think at that stage.

CC: Yeah. And what feels like the next kind of step in your journey after that?

Cathy: I think the next thing is, my 2 children who have came before, Ben and Lola, have gone to mainstream school, I’m a Mum and all I know is mainstream, all I’ve experienced is a little bit of eczema, life is kind of, a bit textbook, really.

CC: Yeah

Cathy: So I desperately would like my son Guy to go to the same mainstream school, where his brother and sister have gone before. We will fit in, we will make it work, and he belongs there. And I look back at myself now, and I can see what I was trying to do, and I would say things like “I’ve got to give him the opportunity, because if I don’t, then how will I ever know?” and “who’s to say, who can tell me, what he can and can’t do, because we don’t know.”

CC: Yep

Cathy: And I placed him there, and it wasn’t straightforward getting a place. The headteacher at the time said to me “If this was my child, I’d want my child to have a chance”, and I’ll never forget that. And he began life, and he’s mixing with other little 4 year olds, and at that age, you’re only really playing, and so it was ok. He did alright. It was only really when we went higher into the school, so he lasted in the nursery and then reception, and then it just became clear that he doesn’t, he’s not fitting in, we’re even having to take the register in a corridor. He’s not really part of the day anymore. And that’s when the conversations turned to special school, of which I held many, many fears. But by this point I’d realised that actually his experience of mainstream school, it took me a long, long time to get there, but it wasn’t serving him. And also as a Mum on the playground, I’m not rubbing shoulders with anyone else who’s got a child with needs.

CC: No

Cathy: And so it’s compounding how I feel about myself as well, and I’m trying, I’m just not fitting. So when I made the decision, not the primary school, when I made the decision, that it’s time to think about a special school, that is what we did, and we went to explore all the special schools. Before I wanted him to go to mainstream, special school had been suggested. To which I had said “no, thank you.”

CC: Yeah

Cathy: We end up going to look at the said school that was recommended in the first place. And when I walked in that school almost 2 years later, I realised then in that moment, “oh gosh, this is his school. Of course this is his school!” It’s just taken me 2 years to work it out. “Please, is there a place?” There are only 2 places, and the fight comes in me, and yes we get a place, and the headteacher says, “when you walked away 2 years ago,” she said, “I hope you don’t wait too long, because these places are gold dust. And many, many children are cared for in a mainstream school with a nice budget, with someone, but the building is wrong, everything isn’t right about it.” So I got there in my own sweet time. So, life begins in a special school.

CC: Yeah. I’m just thinking, there’s a real compassion isn’t there, in that Head, to know that she had noticed you, and wanted the best for you, and remembered 2 years later that she had thought of you in that way, is really rather beautiful.

Cathy: Yeah

CC: And I’m guessing, added, or enhanced, that sense of, “yeah, we’re in the right place now.”

Cathy: Yeah, very much. It’s interesting when like, emotion comes up, because yeah, no, it’s true, she in that moment stepped into my shoes, didn't she? She’s a Mum, and she thought, “what would I do? What would I want?” And it’s about a chance, isn’t it? A chance, because who knows? And if I’d gone straight to the special school, I think I might always have thought… *tears up* Who knows?

CC: Yeah. And I’m wondering as well if it just takes… it takes that journey to get to the point when you’re ready for it.

Cathy: Absolutely. If someone on that journey had stopped me and said, “duck, there’s a brilliant special school, my son goes, it’d be amazing”, my ears, at that point, they just weren’t ready to hear. They weren’t ready to see. So absolutely, I just had to, I had to go on that journey. And I got there and no-one rushed me and in the end, the choices that I made were empowered because they were my choices, the headteacher didn’t say, “I think we’ve come to an end.” I said, “I can see. I can see this isn’t working.” So yeah, there are certain parts of a person’s journey, that unfortunately, however uncomfortable, you just have to walk it, you have to go, in order to arrive.

CC: Yes, yeah. And when you were talking about being on the playground, there’s just a real sense of loneliness in that, standing there and having nobody who gets it.

Cathy: Yes, yeah

CC: Nobody who’s in a similar situation.

Cathy: Yes, I remember one man, one parent, I don’t think he meant anything, he didn’t mean bad, but I remember one day he just said to me, “what’s wrong with him?” And…where do you even begin? And I didn’t…And I think I was so used to giving people so much information that I thought, “no, I’m not giving you that information.” Because actually, let’s look at the wording of that. There isn’t actually anything wrong with him. He’s different.

CC: Yeah

Cathy: Don’t get me wrong, there were moments on the playground of real warmth, but it’s a tricky place. As a Mum, the playground, standing around, can be a tricky place. If it’s not the reading age of your child, or competing with little Johnny, or… but I think we all want a sense of belonging, and that school playground didn’t give me that, because I can’t have the same conversations with my child. Because no-one else’s child has needs to the extent of Guy.

CC: Yeah. And you’d had the playground experience with your other 2.

Cathy: Yes that’s right, yeah. Been there, done that, t-shirt, yeah.

CC: Yes, so you had an expectation of what that was going to be like.

Cathy: Yeah, yeah, true.

CC: Moving on, what is life – don’t let me let you miss anything that feels important to tell, though. What feels important to talk about next?

Cathy: I think probably his diagnosis of Autism.

CC: Yeah

Cathy: Autism is this enormous word which serves as like an umbrella for loads of things to go under it. And I remember it had been mentioned, and I must have been so naive because I remember saying “well, Guy can’t possibly be autistic, because he makes eye contact.” And hearing myself say that sentence now makes me realise how much I have learnt about it. So the diagnosis came next, through CAMHS. I remember I wept and I wept. And then I turned that into, “no, this is a diagnosis, doors are going to open now, and actually, let’s get all the cards on the table. We’ve had his skull operation, we know he has epilepsy, epilepsy often comes hand in glove with autism, but not always.”

CC: Yep

Cathy: I feel like Guy is at this age about 5 or 6, and I’m really starting to understand now, what we’re working with. I’m starting to collect all of the pieces of the jigsaw. So yes, a diagnosis of autism, and then me trying to become an expert in autism, that’s really what follows.

CC: There is a journey in that, isn’t there, of both not wanting the diagnosis and fearing what people are going to find, but then the other side of it is that it also brings understanding and knowledge, and actually, your child hasn’t changed, pre-diagnosis and post-diagnosis. But there’s both a sorrow and a gift in it, isn’t there?

Cathy: Yes, yes, that’s right.

CC: Quite complex.

Cathy: That’s right. On that day, your child doesn’t actually change, but it’s how you frame it, really, isn’t it? Because I’d only ever really heard negativity associated with Autism. Now, with Guy being 9, and what I know now, I’ve reframed it quite differently. Actually, it was just the unknown. But equally, he was in a buggy at the time, if he was being quite loud, say we’re in a supermarket, I could turn to the person next to me and say “sorry about the noise, he’s autistic”, and you would get more of a knowing look, and I felt slightly empowered to be able to give it a name, rather than “my son just has Global Developmental Delay and I don’t quite know what’s wrong with him but I know it’s something.” It just doesn’t wash, really, does it? So yeah, it is a gift, but it’s also the start of a new journey.

CC: Yes, absolutely. And not a gift that anybody wants.

Cathy: No. But again, this is something that I have battled with, because, I am an optimist, and I try to have my cup half full; there are times along this journey where I literally just want to say, “No, don’t like it, don’t want it, wouldn’t choose it, wouldn’t wish it on anyone.” But, because I know I’ve got to keep going, sometimes I use this language of “yes, but, he’s not in a wheelchair”, and “yes, but…” Do you see? I try and… But yes, it’s nice to acknowledge that it’s tough and it’s hard. Because that diagnosis, it’s a game-changer.

CC: Yeah

Cathy: And with that comes regression of early little bits of speech that my son did have, that then disappeared for example. But, I would say the diagnosis propelled us forward. Yep, it did, it moved us forward. Knowledge is power, isn’t it?

CC: It is. It really is.

Cathy: But then I’m energised, reading about it, finding out about it, “did you know ‘blah-blah-blah’?” And yeah, I’m hungry, I’m hungry to learn and to want to understand as much as I possibly can.

CC: There is a great love and serving of your son in that, isn’t there? In that wanting to know and learn and support him, and be all that you can for him.

Cathy: Yeah, absolutely.

CC: So what comes next in your story, Cathy?

Cathy: Probably life within a special school.

CC: Yeah

Cathy: Which is a very happy life. Aromatherapy foot massages, swimming, trampolining, beautiful members of staff, people who are really starting to learn and get to know my son, *tentatively* Guy maybe making a friend and being invited to a party. *stronger* And the joy, being invited to a nativity and seeing him as an angel. Or dressed up as a chicken. The joy, the joy, of all of that, and then being able to measure his success, and his ability to learn Makaton. I’ll never forget we went to a parent’s evening without Guy, and the teacher said “oh yes, he can sign his name” “What? Pardon? He can sign his name?! No way!” And alright, language isn’t coming, speech isn’t coming, which is something that we as a family have all longed for, but he’s trying to communicate in other ways, and all of these teachers here are equipped for that, and Guy builds fantastic relationships, particularly with adults, and then there’s a coffee morning and I’m allowed to go and meet other Mums, and share stories, and then covid came along.

CC: Yeah

Cathy: And that really *sigh*…I really felt like this coffee morning, and I was really at the heart of that, I was making friends and it was my fortnightly sort of check in, I loved it. And then the world changed. Really, for everybody. That coffee morning has never come back. And Guy goes on a bus, comes back on a bus, and you are a little bit at arm’s length, but I have an amazing relationship with the bus driver and the chaperone, they’re my link, and brilliant communication with the school, it’s a happy place. And I see the life of my other 2 typically-developing children and actually, I realise that actually, “wow, how lucky you are, Guy. You don’t have a mobile phone, for example, and all of the things that can happen on a mobile phone, positive and negative.” Bullying, or what people think. Guy is happy in Guy’s world, and I’ve come to realise that actually, Guy’s world is pretty good. It’s a nice place to be. So nice, it’s a nice place. And it’s a place that I need to visit. I need to go into his world, and not expect him, all the time, to come into ours and do what we do.

CC: Yeah. There is a real cost to that for you as a family, isn’t there? Because your life and your world as a family has particular things in it, and particular ambitions and things that you want to do, and actually, Guy’s world is quite different to that. And so you’re in this place, aren’t you, of trying to accommodate 2 quite different worlds in your family.

Cathy: Correct, yeah. And that shows itself when you try and book a holiday, for example, or something as simple as just trying to go out of the front door, you are met with challenges all the time, but I’m raising 2 other children who are leading their lives as well. But again, maybe I’m on the cup half full, but Guy leads a full life. We’re not sitting here within the 4 walls. Sometimes he has no choice other than to move along with the ebb of our family flow, but yes, there are compromises, a way of leading your life differently.

CC: Yeah. And there are moments when those compromises are really painful.

Cathy: Yeah, yeah. Which is why, one of the reasons why, I don’t look too much into social media. I feel very honest saying that, I sometimes feel I have to just stay in my lane. Work in my garden. Keep going. Because I’m doing ok. Sometimes it’s very easy to look elsewhere and see spontaneity and opportunities and possibly things that I can’t do. But, I can do lots and lots of things in my life. I just have to make a little bit of a master plan along the way. Yeah, and I’ve come to realise that I can make things work. It’s just a slightly more long-winded approach. I can have many, many things in my life that bring me joy. Yeah, tricky one, that.

CC: It’s a really healthy way of looking at it, isn’t it? “I’m going to stay in my lane and appreciate what’s in my world.” And there’s something self-protective, isn’t there, about not doing too much looking at social media, and what’s happening in other people’s lives. But sometimes difficult not to do that.

Cathy: No, I think I’ve…

CC: You think you’ve got it?

Cathy: I think I have, I think I have. Try and live a little bit in the now, and try and think about what is important, and the journey that we are on as a family unit. Keep moving forward. And yes, we might do things differently than that family, but this is our normal. This is what we do, this is what works for us. And how my other 2 children have impacted, and how that has turned them into the people that they are.

CC: What do you see in them that you think you might not see were it not for Guy?

Cathy: So many things that I feel very, very proud of. Them looking at anyone who is different or disabled, and looking at it in…celebrating it, really. I remember Ben once saw a boy in a wheelchair and he said “I really want to go up and say ‘hi’.” “Well, go for it, go and say hi,” and I thought to myself, “I wonder why he wants to do that?” And then I realised, he wanted the boy…to let him know that he sees him. It’s that compassion. It’s things that you can’t learn in a school behind a desk. You have to have lived through things. So they are, they’re very, they’re kind, compassionate children with high levels of tolerance and patience as well. Because they have had to tolerate some of the things that we have had to work through as a family. Of having some patience, of waiting, and “no, we can’t do it that way because we’ve got to do this” and sharing their Mum, as well, and sharing their Mum and not sharing her equally. They know that because I don’t give thirds to each of them. Because I can’t. Guy needs more of me. So how does that impact a child? So I like to think that when they’re out there in the big wide world, and they one day have a job, they will have their CVs of their qualifications, but they’re going to have a whole host of other fantastic qualities, which Guy will have developed within them. I feel very proud.

CC: So there’s an emotional maturity that you can see in them that you don’t see in their peers.

Cathy: That’s nice, yeah. Yeah, emotional maturity. Emotional intelligence. So thank you, Guy.

CC: And you said that you feel you need to ‘visit Guy’s world’, so what is it that you want to visit in Guy’s world, what is it that you like in that?

Cathy: Yeah, so for example, we could be in the bath together and I make a silly noise and it makes him laugh, so I might do it over and over and over again. In the end I might have a moment where I’m not even sure what I’m laughing at, I’m just laughing at him laughing. Or he’s engaging with something on the tv and it’s just ridiculous, and it’s just meeting him where he is. Trying to understand things from his point of view. And just sitting with him. Out of the 5 senses, he absolutely loves touch. So he’d quite happily let you touch his feet, and just quietly, just being with him. Not rushing. And if he’s interested in his tiny little – he’s got his little counters and his little blocks. Feeling what they feel like. What’s the fascination here? Trying to almost mirror what he’s doing. Rather than getting him to change to be like us.

CC: Yes

Cathy: Because there’s value in him, and what he does. “So let’s see, let’s have a look, let’s see what your world is like.”

CC: Yes, and if you want connection, you have to step into his world, don’t you?

Cathy: Yes. So he might make one of his high-pitched noises, well, I might make that noise as well. We’re having a conversation. It’s about giving respect, I guess, to what he brings and what he offers, in terms of how he operates and communicates. So I think that’s what I meant by stepping into his world, let’s be there and see what it’s like. And like I say, it’s quite a nice place to be.

CC: Yes. It sounds like quite a now place to be, in terms of being in the moment.

Cathy: Yes, yes

CC: And quite mindful

Cathy: Yes, yes. One glance from Guy. There are no words, and yet the way he looks so deeply into my eyes, and the connection, and how he looks at me, and Dad, and his brother and sister, and even the dog, and grandparents, there is a lot, a lot going on within him. A lot. But we have to go finding. We have to pull things out, we have to draw things out of him, and we have to push him as well. And we have to push ourselves, as well, otherwise our comfort zone, nothing exciting’s gonna happen there. So we’ve put Guy on a 70mph zipwire, we’ve taken him disability surfing, strapped into a surfboard, we’ve done stuff to try and push him, push him to reach the potential that is within him.

CC: Yeah, and to experience the world.

Cathy: Yes. Absolutely.

CC: So what did you think of the zip wire?

Cathy: Erm, it was horrifying. He was strapped on, complete with goggles. He’s on a line of his own, he’s not strapped to another adult. And he’s whizzing down at 70mph. I’m not a risk taker, so to put my faith into the lady who was in charge of us that day, she gave me the strength. “You’ve got this, you can do this. You can.” She said, “there’s many, many children who’ve come here with needs, who’ve done this.” It took a huge leap of faith, and Ben was very, very nervous. And very upset. But we did it. And we got to the end, and Guy signed “more”! *both laugh*

CC: Brilliant, brilliant.

Cathy: It was massive, a massive thing that we did that day. I’ll never, ever forget that.

CC: Well done. Courageous risk to take. And trusting your own judgement that this was going to be a good thing.

Cathy: Yeah

CC: So he’s physically quite adventurous then, your Guy.

Cathy: Yes, he’s physically very mobile, and physically able-bodied. We did have a period of time where we owned a wheelchair, but it’s now in the garage gathering dust. Don’t like it. It’s difficult to get Guy to walk from A to B unless he knows where he’s going, so if I were to say to him, “Guy, shall we go swimming?” the chances are he would walk to the car. “Guy, shall we go to Aldi?” Well, no, he’s not. So, he’s mobile, but he has to be motivated to know where he’s going. But he can run, he can jump, he can pick up a ball, he can bounce on a trampoline. He’s got a fantastic body. Which is amazing.

CC: And he’s up for a zip line.

Cathy: And he’s up for a zip line, yeah. *both laugh*

CC: So does he do rollercoasters, or have you not explored that?

Cathy: Yeah, only once, we got fast-tracked at Alton Towers, and even fast-tracked does involve – you know, just the process of getting in Alton Towers is quite an ordeal. But once we were on it, yes, he did quite like it, and there was the In The Night Garden ride, which was very magical. But the trade-off for that little 2 or 3 minutes on a ride –

CC: *groans in recognition*

Cathy: there’s a lot of in-between time. So it’s not something that I’m racing back to do, but it’s there for the taking, isn’t it?

CC: Yes, yeah, yeah. So how would you say that being Guy’s Mum has changed you?

Cathy: I am a different person because of him. I see the world differently. I think disabled people, and people who are different, of course they have always been there, but now I definitely see the world through different eyes. I see people and a bit like Ben, I see them and I more than see them, I want to acknowledge them. I want to smile, I want to connect, I want to make them know that I see them. I work in a special school, and I feel that I’m able to reach the children on a slightly different level, because I’m both teaching them and obviously I’m living my own experience as a Mum. I’m very tolerant. He’s taught me tolerance, he’s taught me that difference isn’t necessarily a bad thing or a scary thing. He’s shaped me into who I am. I’ve met people along the way that I never would have met were it not for Guy as well. We probably wouldn’t have got our dog, were it not for Guy. There’s so much enrichment that has come, because of him. So I am changed.

CC: I can’t remember how many years it is since we first met, but I’d say that you’re more centred and grounded and settled. And peaceful, now, than you were then, and I’m wondering what has enabled you to get to that more peaceful place?

Cathy: I think it’s a combination of allowing Guy to open up like a flower, to see that he can walk and he’s not tripping up, and he’s safe, and actually, when other eyes are looking after him, he doesn’t come to any harm. This is ok. And just that I am a bit of a helicopter Mum, but bit by bit, slowly, slowly, I am just letting him go, taking risks. Again, we’re back on the journey. Why do I appear like I am more centred and grounded and the things that you describe? I think because I have travelled along the road. That’s the real answer. Because I’ve done 9 years. And I’m starting, I can honestly say, starting to relax a little bit. Just starting to relax. And I think Guy’s very much like a mirror as well. When he sees me relaxed, I think we have a bit of an energy with one another where he mirrors how I feel. So it’s good for me to relax and allow other people to help me as well.

CC: Yes, yeah. So that was harder to do a few years ago?

Cathy: Yes, in the days when we first met, like you say, quite a few years ago, “Oh, I must do that, you won’t understand him, let me.” So yeah, letting people, people want to.

CC: Yes.

Cathy: I’m blessed that I have kind, amazing, caring, compassionate, people in my life, who want to know Guy, get to know Guy and be part of his life. And that’s what I love, when a friend not only sees me, but when they see what is part of me, which is the rest of my family. It wasn’t an overnight thing getting to this place.

CC: I would notice that you’re less exhausted than you were.

Cathy: Yes, and I think that’s because of the self-care that I now have weaved in. So I believe that movement is like medicine. I’m not a fitness guru or anything, but I do prioritise exercise, and that serves me very, very well. Coz then that strengthens my mental health, my mood, and it makes me a better Mum. And I will go and have a weekend away, I have had 3 nights in Spain with my best friend. I’m allowed. And I can, and I have, and I will, and I will continue to. And I also want to make lots of really beautiful future plans with my husband as well, because over the past 9 years we have agreed that we have channelled probably all of our energy, married life began being pregnant, so we’ve put all of our energy into our 3 children and we’ve raised these 3 beautiful children, and actually, I would like some lovely time with him. So you mention self care and looking relaxed and not so exhausted, I think it’s because, in order to sail this ship, and be at the helm of this ship, I have to look after myself. And I will look after myself, and I deserve to.

CC: Absolutely

Cathy: And no-one wants an exhausted Mum. So actually when I take a break, good! Everyone else benefits.

CC: Absolutely.

Cathy: Everyone else benefits from me being in a better mood.

CC: And this is not a short journey, it’s a long one, so you have to be able to sustain yourself along the way in order to thrive.

Cathy: And in order to be Guy’s Mum for the rest of my life.

CC: Yeah. In a different way.

Cathy: Yeah.

CC: To the one that you will be for your other 2 children.

Cathy: Yes, that’s right, yeah.

CC: Do you think much about the future?

Cathy: Erm, I can honestly say, no, I am…I can potentially tell you what I’m doing tomorrow. I don’t know, I don’t think, I never really plan too far ahead. And I think that’s ok. So I’m not looking too far into the future and applying any worry, because ‘today has enough worries’.

CC: *laughs* It does!

Cathy: Yes, today’s got enough, so no, I don’t have dark thoughts, I don’t think “oh my gosh, when he’s this age” or “what will I do?” Not really. Just get through…half term’s approaching, I’ll conquer that, that’s my next thing. Day at a time.

CC: I think that’s very wise. So if you could go back and have a conversation with the slightly younger you at the beginning of this journey, I wonder what you might say?

Cathy: Wow, it’s such an incredible question to be asked. Crikey, what would I say? What would I say? I would…just look her in the eye and hold her hand *tears up* and just take each day as it comes, meet the people that you’re supposed to meet, take all the advice and listen to all the advice, but then do what you think. Listen to your intuition. That will be my guide. People will come in your life, people will go. *even more teary* But hang on to the people that are your mainstay people, and to have trust in your child, that he’ll guide you. That he will show me… *teary* I found that question quite difficult to answer. I think one of the reasons it makes me emotional is because of the kindness and the compassion that I now would show –

*both talk at once*

CC: to your younger self // Cathy: to myself.

CC: Yeah, absolutely.

Cathy: *still teary* I would, I’d really be so kind. I’d say, “it’s ok.” None of us know what the future holds, no-one, and I’m always full of hope. I’m always full of “who knows?” So, I can’t meet her, I can’t go back, but I’d also say to her, “well done.”

CC: Are there things that you would say to other people walking this kind of journey?

Cathy: Quite often, if I meet another Mum of a disabled child, I often say, “what helps you? What gets you through?” I ask it to everyone, and I’ve had so many interesting answers, from a bottle of wine, a bit of chocolate, shut the door; everyone’s is different really. So I would… I almost wish I’d had someone like me at the time to be my friend. And I think it was making friends with those beautiful Mums at the special school. That was a pivotal point, that really helped. So I think no matter what you’re going through in life, to find your tribe, to be with other people who are walking in your shoes, that’s got to be it, that’s got to be, for me, when I started to just feel quite different about my story, really. So yeah, make sure you’ve got people in your life who understand you, by however means, in the fast world that we live now, either physically being there with someone, or even on social media. I’m not sure I had that person until it came a bit later in my journey. I wonder if that person had been there whether my ears would have been open, so I don’t know, I don’t know.

CC: So there would be something you want to say to people, walking this journey, something about finding your tribe.

Cathy: Yes

CC: Which, I just have this image of the difference between the coffee morning and the camaraderie, and those experiences of absolutely not being in your tribe, the school playground sort of experience, and they’re just day and night, aren’t they?

Cathy: Yeah.

CC: And that thing about, notice what it is that sustains you. And embrace it.

Cathy: Yes. *both laugh*

CC: Yeah

Cathy: Yes

CC: And you do drama.

Cathy: I do.

CC: Alongside being Guy’s Mum. I’m wondering what else gives you life and joy? How else do you like to express yourself?

Cathy: I enjoy being a Mum. I do enjoy being a Mum. Being there for my children, however they need me, and I feel like my role as a Mum is forever changing, new challenges coming in all of the time. I love to go to the theatre, I love to go to the cinema, I enjoy walking, I love going to a spa, I love to cook a nice meal, I quite like being on my own, I like my own company, I like being with friends, I like exercising, and they’re just some things off the top of my head that are lovely things to do. It is like putting on different hats because I get to go out and do my job, and I get to do my job, and I am Guy’s Mum. So I have those eyes, all of the things that he’s taught me, that I can then apply to who I am.

CC: And I have definitely seen that empathy that you have, and that ability to embrace, and walk alongside make a difference in your role in the drama clubs that you run, for example. I’ve really seen that and the huge value of that.

Cathy: Absolutely, it’s so vital, isn’t it? Because I think children look to you as an adult to see how you behave to someone else. And we model that, don’t we? I love that side of my job. I feel very, very passionately about inclusion. And children fit, coming together and valuing and supporting one another. Really strongly, actually. What better way to do it than creatively, where there’s no right or wrong, but a child can just express themselves. Be themselves, be joyful. And we can all come together. And there can be different ages and stages and yeah, it’s wonderful.

CC: Yes, and there’s a real resonance of that, “there is no right or wrong. There is something good in all of it”, that really resonates throughout your story. Things didn’t work out as you expected, but that coming to terms with the fact that what it is is what it is, and it’s ok, and it’s good.

Cathy: Mmm, I see what you did there.

CC: *laughs*

Cathy: Yeah, yeah, there is a coming to terms, sometimes I wonder have I just got one foot in acceptance, or both. But I think I’ve got 2, now. I think I have arrived. I think I’ve had to be shoved, I don’t think I’ve gone there willingly, but I have arrived now, and I’m raising my son, who leads a quite a cushioned, beautiful, happy life, and an amazing school, with parents, with siblings, with grandparents, a dog, and we, my husband and myself, we cushion that by…we take the expense of that. I wish I could phrase it a little bit better, but we help make Guy’s life all of those things.

CC: Yeah, yeah. But you say you ‘take the expense of that’, it’s not cost-free, creating that buffer, of creating that world.

Cathy: Yeah, it isn’t cost-free.

CC: It takes a lot of strength, actually, to deliberately walk into that place where you’re saying, ok, this is my life. I’m embracing it. I’m not looking over the fence at other people’s. I will put down the things that can’t fit that I might have liked to have carried. We will put those things down, and we will be in our lane, and we will absolutely make the best of it.

Cathy: And if you can do that, then I think you’ve nailed it, really.

CC: I find that inspiring, I find you inspiring.

Cathy: Aww, thank you very much. That means a lot. And I would also like to say thank you to you, because to have this opportunity to sit and talk, about the journey that has been raising my children, I’ve never sat and done this, and I will treasure this conversation.

CC: Thank you so much, Cathy.

Cathy: Thank you.

 

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Hope you enjoyed this episode of the Loved Called Gifted podcast. If you’d like to get in touch, you can email lovedcalledgifted@gmail.com You can find a transcript of this podcast at lovedcalledgifted.com and that’s also the place to go if you’re interested in the Loved Called Gifted course or if you’d like to find out about spiritual direction or coaching.

Thank you for listening.

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