We were quite fortunate, about six months ago we were offered a chance to go on a burns camp, um, and that’s probably the only time that I’ve ever really been … surrounded by people who’ve had similar experiences.

It was all very, you know, everyone had a different experience, they were from quite small injuries to large injuries, so various different degrees, which was, of severity, which was, you know, probably helpful for everybody. There were seven other families there. It was the most wonderful experience, I couldn’t comment highly enough on it, we were very, very fortunate. As I say, the part of the country that we live in there’s no, service of this kind, so we were very lucky to be offered a place in a different part of the UK where the whole family got to go. It was really important for my other children to you know, to be involved. But also, I think for the siblings to be invited to these things as well, I don’t know if I’m going to word this properly- so, my two older children made very good friends with a girl who had a large burn injury and I think, for her as a teenager, to be exposed to two children who don’t have any injuries, would be treated the same as everybody else, because my children, you know, wouldn’t even notice at this stage I think it was really important for the girl with the burn injury and I think it was really, also, important for, like, the children without the burn injuries. So, I think to have siblings involved, um, and be able to share kind of experiences from both sides, it was amazing and for us as parents, we were made do a psychology session, which kind of like, you know, my husband rolled his eyes at, and I think he took so much out of it, we both did and we’ve made quite good connections with other parents since then, which is you know, and some of the children are quite new injuries.

And actually, to spend a whole weekend with people who haven’t made any comment on anything to do with your appearance, it must be, I would feel, I’d imagine, quite uplifted. And a little girl Elizabeth made friends with at the camp, interestingly enough as well, her brother had a burn injury, but Elizabeth became very, very friendly with the sister, who has got no injury at all. So, it’s, you know, they all sort of-, you assume that Elizabeth’s going to be drawn to the person who’s got the scar or got the, you know, the visual difference, when actually she just wants to be friends with this girl because she wore pink nail polish or whatever she had, you know, cool hair or, she just liked her. So, it was, yeah, it was a really good experience and one which I hope we get to go on again because it was definitely, definitely very, very helpful for everybody.

I think it’s very difficult with the type of injury that Elizabeth has. You don’t often-, thankfully, you don’t often see many people with injuries like hers and that are so visible as well. So, that makes it a little bit more … I think … I never want to take away from a hidden scar or injury compared to one that you can see, and you can’t hide because they both have different issues surrounding them. But I think if Elizabeth could meet somebody else who she could relate to, which we’ve yet to kind of meet anybody – which I’m thankful for, because it means, you know, that there’s not many people out there with these sorts of injuries facially but, for her, I think anyone … you want to be able to relate to somebody else and there’s only so much I can tell her, there’s only so much a nurse or a doctor can tell her. She wants kind of somebody she can look at and relate to.

Yes, we spoke to a, initially, a clinical psychologist in the hospital but it wasn’t, at that time it wasn’t for me. My husband wouldn’t be, like a lot of men, I suppose, and women, not just men, probably wouldn’t be as open with his feelings, with people he doesn’t know. I certainly wasn’t at that time, definitely not, you know. It just wasn’t the right time. I didn’t really understand what a psychologist was for at that time when Elizabeth was so young but she was a children’s psychologist, so I didn’t know if she was for her, for me, I didn’t really understand the whole situation really. And then I’d had a couple of experiences over the years, um with psychologists and, again, I’ve never, it’s never really been for me. Until recently, I’ve very, very recently been seeing a psychologist and, I don’t know if I’ve changed or if I’ve just got to a different understanding or if now was just the right time, I don’t know. But up to now, I’ve never really felt the need to or wanted to, probably. And now, like coming up eight years post-injury, I’m finding it far easier to speak about.

Do you find it helpful?

Definitely helpful. I wish, in some ways I could have, and I have spoken about this with the psychologist, I wish I could have spoken to myself back then of the self I am now. You know, everything’s better in hindsight, isn’t it? But I don’t know. I don’t know would it have ever been the right time? I think everyone’s got different needs. I know some people initially would probably like to tell everyone their, you know, what’s gone through their brain, but it just wasn’t the right time for me. And, as I say, now is and it’s definitely helped me massively, helped me understand, a lot of the, I suppose, the way I behave now. I’ve never really understood but I can now kind of place it back to very traumatic events that I probably have never really dealt with. So, I wish I could have done it back then, but it wasn’t the right time.

I remember, very early on, and I’ve said it many, many times over the years, that I couldn’t wait for Elizabeth to be of an age where she can make these decisions herself, which sounds really, really selfish but it was, I suppose to take the-, sounds awful, like the guilt off me. That she chooses to have these operations because she wants them, not because I am pushing her to have them or you know, it comes from her. It sounds really, really selfish but it’s, yeah, I’ve always said I couldn’t wait for her to get to an age where she can just kind of make her own decisions herself.

And is that getting easier for you as she gets older or is it more of a worry?

I thought it would be easier but it’s actually not. So, yeah, I don’t know because obviously, you know, we’re at a stage now where she needs things done and I suppose she’s going to start saying to me now “Well actually, I don’t want this done” when I know she needs it done. So, it just the different stages, I suppose when you’re very, you know, you’ve a very young child, you wish for them to be bigger so that they can do something else, you know, make them more independent, make them more whatever it is, and it’s the same with surgery. But now I’m at that stage, I’m like “Oh my God, it was so much easier when she was younger, and I could mind her and mollycoddle her.” So, yeah, I suppose it’s just the same for anything in life, you’re constantly wanting something else and then it comes along, and you think “Actually, that was easier.”

We got on, actually, we got on quite well, if I’m honest, and we probably got more close than ever before and I’m well aware it can go the opposite way, and it could have easily gone, I’m sure, the opposite way with us, in a highly stressful situation and, you know, it’s-, and you’re on top of each other all the time, you know, in the same room and I think we’re quite good at acknowledging when you need a bit of space, when one of us needs-, we did a lot of shift work staying over with Elizabeth, so we weren’t constantly kind of in each other’s faces, and my husband likes to pace up and down so when he would pace up and down and drive me insane I would tell him to go and get a coffee or try and do everything in the politest way, when you probably want to just scream at them to, but you need each other and that’s the-, you need people, whether it’s a partner, a mum or dad, whatever, you need people who know you and he was my person, there was nobody else.

I remember somebody telling me, a surgeon, that she’d be able to play the piano, she wasn’t going to lose as much of her fingers, and he thought she’d be able to play the piano, and I was like ‘Oh my God, thank God, she can play the piano. That’s amazing!’ And then, the following day, another surgeon came in and said, ‘You know, I know you’ve been told this, but she’ll never be able to play a piano.’ And I burst out crying in, like, despair of my child wouldn’t be … my six-month old baby won’t be able to play a piano! It’s … it all sounded so … I was so disappointed and a couple of hours later me and my husband were walking down the corridor and I burst out laughing and he said, ‘What are you laughing at?’ and I said, ‘I can’t believe that we’re crying that she won’t be able to play the piano. Like, there’s no-one in our family that can play any musical instrument.’ So, I don’t know why it had become so important at that time that … it was like somebody giving me a glimmer of hope that she wasn’t going to lose all her fingers and then, the next day you’re told ‘Oh, actually she won’t be able to play the piano anymore’ that she could never play to begin with.

I think we probably laughed more during those, you know, probably when she was initially very, very, very ill, we probably laughed more than we ever have probably in our lives, and it’s probably shock, fear of the unknown, your emotions are all over the place. Probably the staff, nurses, doctors, play therapists, whoever is involved, chaplaincy team, they’re all trying to kind of, I suppose, jolly you along and get you through another day. And I think mine and my husband’s coping mechanism at that time was probably to make light of an awful situation and, yeah, just to laugh and try and get through the day as best we can which, looking back, if anyone saw us probably thought we were lunatics. But that was just our coping mechanism at that time.

Yeah, I just think it’s only a small part of her story, or her journey, not even, you know, the story has an ending – this doesn’t have an ending yet. So, yeah, it’s a very small part of who she is. It’s a massive thing that’s happened to her, but actually on the grand scheme of it she’s like that, she’s Elizabeth, she’s eight, she’s a sister, a friend, a daughter and she wants to be a Formula 1 driver, she wants to roller-skate around the world, you know, there’s a million other things that are, you know, far more interesting than she had a big burn injury.

It was very, very frightening. Very upsetting because you see like, and I’d bought like a you know, a new pushchair and people see a new pushchair don’t they, a nice bright pink and they want to have a look and then people look and go, “Oh! Oh…” and no-one really knows what to say so it’s very frightening because you don’t want people to look but, at the same time, you don’t want her to be hidden away either because she’s fought so hard to be here that she doesn’t deserve people’s gasps or, you know, horrible comments. I used to not dress her, I used to leave her just in bandages and one of the nurses – the one I’ve spoken about quite a bit – she used to buy Elizabeth clothes and she used to say “C’mon, we’ll dress her today” and I used to say, “No, what’s the point?” She was very, very heavily bandaged. And “What’s the point?” and she’d say, “Because it gives people something to comment on.” So, even if it was just lay the dress across the top of her in the pram it would give somebody, rather than go “Oh! Oh …” they would say, “Oh, that’s a pretty dress.” So, she kind of, obviously very subtly would give me little tactics along the way or, pretty hat, or whatever, and I still do that to this day. Yeah, I make sure she’s dressed a certain way to give people an opportunity to say something nice or to sort of pull themselves back in a little bit when they want to, you know, make a face or whatever, make a comment.

It’s’ … it’s … somebody gave me some very good advice very early on, on how I will react is how Elizabeth will react. So, if I want to have a child who’s going to be angry all the time and aggressive and … you know … I don’t know, maybe nervous, anxious, whatever … whatever it is, I have the power to shape, I suppose, to a certain point of what sort of person she was going to be. And I didn’t want her to be that angry person, I didn’t want her to be, you know … hateful or anything like that. You just … I wanted her just to be able to get on with life as best she can. So, I made a very conscious – we all did – very conscious decision from very early on to… to not be … even though you feel it inside, to not be aggressive, to not be, you know … confrontational with people, to shout things, to reply, even though that’s how you feel sometimes, you want to say, ‘What are you looking at?’ You have to kind of keep it inside because that’s how I want her … she can’t go through life being aggressive or hateful or … so, we’ve made a very conscious decision – it’s really, really difficult, I’m not going to say it’s easy. Some days are easier than others um … you know, and it’s really hard, you’re teaching people … I feel like Elizabeth’s teaching people how to behave sometimes.

So, in some ways we’ve all got really good coping mechanisms but as Elizabeth changes and gets older, how she responds is different, so that becomes like, it evolves with her and that evolves how I, obviously, feel. But ultimately, children learn from us. So, you’ve got to contain it sometimes. Or teach. And I always say to people “Elizabeth’s not immune from looking at people either” because this is her norm, how she looks is her norm, so she doesn’t see why people look at her. So, if she looks at somebody who looks different, I have to do the same thing anyone else would have to do, the opposite way around about Elizabeth. I have to explain, “No, that person has really bad eczema” or “Oh, that person has got no hair, maybe because they’re having treatment” or “they’ve got alopecia.” So, she’s not immune from asking questions but it’s how we deal with it as adults is how they learn that it’s ok to be different.

She wears sun cream all the time anyway, we have had incidents before where emollient has been applied and she’s been let go out play, whether she’s in a playgroup or school or whatever, they’ve let her go out and play and she’s got quite badly sunburnt, because a lot of these emollients are oil-based. So, she now has a-, we’re very strict with sun cream, so she wears it winter time, summer time, she’s got burnt all times of the year on days that you wouldn’t expect somebody to get sunburnt. So, she always wears sun cream, always wears a hat if she doesn’t have a wig on, so yeah, so we’re very, very cautious with the sun with her. Very like, extra cautious, so, yeah, that’s probably another element where you have to kind of think a little bit ahead. You know, we’ll ask them in school “What time is she going out to play today because she’ll need to have cream on” to avoid a situation where she gets burnt.

So, Elizabeth gets up in the morning, has a bath in all the emollients and lotions and potions that you become very accustomed to. She is then moisturised and massaged – again, depending on surgery, you know, what she needs done at that time. Post-healing you have to massage these scars quite a bit so it depends whether we just put the cream on or can be a bit more lengthy. She has two visits during school day, where she will have emollients again, and steroid cream, depending on her eczema, applied. She comes home from school, has more cream applied and then she will take a bath or a shower just before bed, the same process that she has in the morning. So, emollient, creams, bathing all just to keep her skin hydrated and to help with her movement as well. The more massage she has, the more mobile she is.

I think it’s always, you know, worry for other children. And my parents and sister, who they were living with at the time, because they gave up their life to care for our children. But I think it was the hardest-, because our other children were so young that it was the hardest part was, I suppose, for them asking questions, especially our oldest one at the time because he was only I think he was six and kind of saying ‘Well, why do you and daddy have to be with Elizabeth but we’ve got nobody?’. And that was really, really difficult because, trying to explain that to, like, a just-gone six-year-old, you know, that she’s really ill and she needs both of us, and he was like ‘But we need you too.’ So, it’s-, the other two were probably too small really to kind of understand. But that was, you know, that obviously breaks your heart as a parent because you’re torn between this and that and you feel like you can’t please anybody and you’re making everybody upset, including yourself. So, that was probably the hardest part, you know, the living in temporary accommodation or, you know, running back and forth to hospital. It’s, you know, as hard as it is, I think when you’ve got other children and you’re torn between everybody that was probably the most heart-breaking part of everything. And the guilt probably.

What was the guilt like?

Well guilt is awful and it’s the worst as a mother anyway. You know, I’d ring up every day to speak to them, to Facetime them, whatever, and they wouldn’t want to speak to me, especially the older one because, obviously, he understood a little-, a tiny little bit more than the other two but yeah, it’s just like that guilt coming away from the phone or video and, you know like your heart is aching because you’ve got, like, nobody and you want to please everyone but you’re pleasing nobody and it’s yeah, the guilt is horrible. And then questioning yourself as well, ‘Well, maybe one of us should be with them and one of us should be here.’ You just literally are torn between everything and everyone.

Immediately after arriving in the hospital, we were told that she couldn’t be treated there and were we told to try and get her out of the country as quick as possible. It took five days for her to be flown to the U.K. On day six we came to where we currently live and she’s been treated there ever since. She was in a medically induced coma from the initial injury, and she remained in a coma for about eight/nine weeks, I believe, and then spent about another three months in the high dependency burns centre in the hospital, and she’s been treated there ever since.

There’s nothing more frightening I think that your child being brought to a hospital and then being told that they can’t treat her. That was probably the initial panic and upset is, you know, you feel like you’ve got them in a safe place and then somebody tells you ‘Well, actually we can’t look after a child with an injury this severe.’ So, for those five/six days it was panic, it was just trying desperately hard to get her to a country – any country – that could treat her injury. Yeah, very, very frightening. Very, very frightening and then, when you get that call to say there is a bed available in the UK, it was, you know, the relief because she’d been actually given a chance to survive. Up to that point, it was just keeping her alive with no chance of survival, but when you get that call to say you can come, you know, at least we felt like we were giving her the best possible chance.

But of a normal month it’s, she would have regular physiotherapy, so she’s got quite a lot of burns over joints, which obviously affect movement, so she has to have them regularly kind of her range of movement measured. She’s quite a lot of OT (occupational therapy) input for the scar management at varying times depending on the surgery but also for her function. So, she’s had some handwriting assessments at the minute because she’d been struggling a little bit at school, so they’ve done some work with her, they’ve done some work with her, how to use knife and fork more effectively. So, she’s had quite a lot of appointments for that. She also is seen quite regularly with the ophthalmology department because she was burnt on both her eyelids. Her left eye, in particular, is particularly troublesome, her eyes don’t close properly so she ends up with quite a lot of infections, and she is seen very regularly with dermatology because she was one of the unfortunate ones that got eczema on top of her scar tissue, which isn’t uncommon, but she was just unfortunate that she’s got, it's quite troublesome for her.

So, when they were telling me that she would lose all her fingers, I couldn’t understand but why? Like, they’re there so why, you know? So, I suppose, you’re a bit naïve and I’m thinking, you know, all these things. I remember somebody telling me, a surgeon, that she’d be able to play the piano, she wasn’t going to lose as much of her fingers, and he thought she’d be able to play the piano, and I was like “Oh my God, thank God, she can play the piano. That’s amazing!”. And then, the following day, another surgeon came in and said, “You know, I know you’ve been told this, but she’ll never be able to play a piano.” And I burst out crying in, like, despair of my child wouldn’t be-, my six-month old baby won’t be able to play a piano! It’s, it all sounded so, I was so disappointed and a couple of hours later me and my husband were walking down the corridor and I burst out laughing and he said, “What are you laughing at?” and I said, “I can’t believe that we’re crying that she won’t be able to play the piano. Like, there’s no-one in our family that can play any musical instrument”. So, I don’t know why it had become so important at that time that, it was like somebody giving me a glimmer of hope that she wasn’t going to lose all her fingers and then, the next day you’re told “Oh, actually she won’t be able to play the piano anymore” that she could never play to begin with. So, I suppose my understanding of burn injury. I knew it was bad but nothing quite like what we faced. And I suppose I didn’t have an appreciation on the kind of lifelong effects of a burn injury.

And I think when you’ve got, like, a long injury, like a lifelong injury, like a burn, it never goes away, you need constant treatment, so you become very close to these people, and then they do, and it sounds like a real cliché but they do become your family. And there’s too many times, I couldn’t even point them out or remember. At one point one of the nurses, who remains, you know, working in the same place, she wrote me a note on a bit of, nurses do this, on a bit of tissue paper. She had wrote me a note to say have a lovely weekend, that she was going home to wherever she was from and that she would see us on Monday, and I kept that bit of tissue paper all folded up, and I found it quite recently, like nearly eight years later, I found it all folded up, because that small little act of somebody scribbling a note on a bit of, like, tissue paper meant so much at that time which, again, sounds crazy, but it’s just those little things, and to know somebody cares and somebody’s watching out for you is, you know, it’s huge.

And you think that was important when you were at possibly, probably the lowest point you’ve ever been at?

Yeah, and I think I remember that was a weekend, so it was a Friday, it was a Friday evening, and weekends are horrifically lonely in a hospital anyway, but just to know that somebody is thinking of you or somebody, you know, is wishing you, that you have, as good a weekend as possible while your child is, you know, lying very, very ill in an intensive care bed. But just those little things mean so much when you, like you say, you are at your lowest and you’re lonely and scared and frightened and you’ve got nobody else around, a note on a bit of tissue paper meant the world at that time.

She has spoken to a psychologist very recently about, she’s had – only on her last surgery – had massive anxiety and fear over dying, which she’s never had before. She’s had approximately… in the seventies operations to date and it was only in the most recent one that she was really scared and thought she was going to die and, you know, stuff that had never, kind of, come out before.

I suppose when you’ve got a child telling you, you know, kind of, in the days leading up to the surgery, “Mummy I think I’m going to die. I think I’m not going to wake up” and “this might be the last time I see you” and, it puts, it’s kind of, what I’m thinking, I suppose… So, it makes my fears actually become more realistic because you do think that every time that your child is going down for a procedure, you know 'am I doing the right thing? Does the benefit outweigh the negatives that come with it? The recovery time… What if she does die? What if she goes down for this fairly small procedure in the grand scheme of things that gives her a tiny bit more movement in her arm but isn’t going to save her life?' You do second-question yourself, you go “should I do this, should I not do it? Should I…?” you know, "so what if she can’t move her arm, at least she’s still alive". I think, when you’ve got a child – or anybody – who needs surgery to save their life, it’s very, very different to surgery just to improve things.

Immediately after arriving in the hospital, we were told that she couldn’t be treated there and were we told to try and get her out of the country as quick as possible. It took five days for her to be flown to the UK. On day six we came to where we currently live and she’d been treated there ever since. She was in a medically induced coma from the initial injury, and she remained in a coma for about eight/nine weeks, I believe, and then spent about another three months in the high dependency burns centre in the hospital, and she’s been treated there ever since.

At that point, in the early days, I was glad for someone just to take her and do something and I knew, well, I felt like she was safe, in a coma, with somebody doing whatever they needed to do to her. My husband probably would have asked a lot more questions than I did, I was just happy that she was somewhere that was being treated. So, he could probably give you more of the, you know, kind of in-depth information of what happened. But I was just happy that somebody was taking care of her, that’s all I wanted. So, I don’t really remember too much about the, you know, I remember her coming and going and coming and going and her being very, very ill but I don’t really remember much in between.