But she goes to lots of things with lots of other children. She goes to various cr’ches associated with the church and things and shes got lots of little friends her age and she does all the same stuff as them. Parents, especially after operations, say ‘oh you will be careful with my child because they’re so rough and I don’t want them to hurt her’ and it’s not been an issue at all. I can imagine with a very active child it would be because they would be much more likely to hurt themselves after the operation.

But it’s a very short period of time that you have to be careful anyway and even then the instructions that you are given about what to avoid and what to be careful of, people are very realistic about what toddlers get up to. And it has not stopped Miriam doing a thing, I shouldn’t have thought, nothing. Shes just done the normal things, I don’t think it’s held her up.

I’ve said that shes got a, well before we went into hospital for the operation I said shes got a poorly heart and were going into hospital for the doctors to make it better and she was going to have an operation. And we showed her photographs of when she had the first operation and, of course, this friend of hers who’s a little bit older has also got a poorly heart. And we talk about, if we see somebody with a poorly something, we talk about it. So from that point of view I don’t think it’s a big issue to her that shes got a poorly heart. And she talks about her ‘scarfs’ which are her scars and she shows people her ‘scarfs. So to talk about things and to show her. Shes quite sensitive about her scar still and if you go to touch it or do something to it, I mean it’s all healed up fine, theres just a little bobbly bit at the top. She doesn’t really like you touching it and she tells you to go away. That’s improving, improving with time.

But we try and tell her as best as she can understand. And my husband is very, very good at doing that. Hes much better than I am and he gets down to her level and he tries to explain and uses really simple words. And theres no point in telling her too much either because they pick up on so much of your emotions and how you’re feeling that at two and a half you’ve just got to be quite careful. But hes very, very good at doing it so we have some job distinction there. That’s one of his things that he does more. And then I talk about it once hes explained it using the same words. But usually he does the explaining because hes very good at it.

That is one thing that’s really hard, is you spend time with your child and focusing on your child and you forget about your husband or wife. And I find that particularly hard because I get very focused on Miriam and also that kind of middle distance hospital thing where nothing happens and when it does happen, it all happens in a sudden rush. And it is almost like you have to switch your brain off in order to be able to cope. And [my husband] finds that very, very hard. So for us both to get out of the hospital and have some meals together and try and relate to each other rather than just relating over Miriam is important and is important for him and important for me to do for him. It would be very easy for me just to focus on Miriam and concentrate on her and expect [my husband] just to fit in. But to try and keep your marriage going and alive at the same time as having this very stressful situation is really well worth, because you are your main supports, however nice nurses and the people that you meet at the hospital, and the doctors are. It’s not halfway as good as your best friend.

Is that something that started at the beginning?

Making sure we spent time together? Yes, to begin with when Miriam had her first operation because she was so new and she was our first child, it wasn’t really an issue because we were only used to relating to each other and there was just this new thing that we hadn’t quite got used to yet. So for the first time it wasn’t really an issue, we were just kind of in each other’s arms the entire time. But certainly for subsequent operations we have had to really concentrate, certainly I’ve had to really concentrate on it. Making sure that I do give [my husband] time because I think it can be a terrible strain on a relationship. And it is, even in a strong relationship, a strain. So to be able to make sure you’re spending time with your husband as well rather than just focusing on the child, which is the natural kind of nature instinct is to look after the child because your husband can, in theory look after himself. I think it is important but hard to do.

When we were in hospital that first time they did blood tests and did checking to see whether it was a chromosome problem, which it is often linked with. But there is no cause for her. And also they were able to tell us that it wasn’t a link, there was no link with this and any other problems that were going to manifest themselves, as far as they could look for them anyway. So that was reassuring. And it’s just bad luck, isn’t it? It just happens to some people. So I certainly haven’t poured over thinking about my pregnancy, thinking what have I done wrong? Certainly that would have, I’m sure that goes through peoples minds, thinking what have I done wrong, what could I have done, how could I have prevented it? But these things happen and that’s just the way it is. You can’t change it; you’re not going to prolong your life by worrying about it. You’re not going to change the situation.

And the other funny thing was when the consultant came who was going to be doing the operation, that was the first time that wed met him, and he walked on to the ward and I was holding Miriam and she looked at him. She looked him up and down and said ‘nice coat’ and had us all absolutely in stitches. The way they can just break a moment. We were all stressed up to our eyeballs and she said ‘nice coat. It was a tweed jacket, as it turned out, it was very funny. Slightly threw us all. He was lovely, looked much younger than we were expecting him to be, but then we saw him wandering around the corridors. Once we left to go and wait however many hours it was, we then saw him talking to other parents in the corridor and things. And every time we saw him, which was twice, we kind of looked at him and thought shouldn’t you be operating on our daughter? But he saw us, recognised us and said, explained the situation, which was lovely for somebody to, he needn’t have bothered, he didn’t need to explain himself, so that was a lovely touch.

And he had a lovely conversation with my husband as well about his family and hes got children and how difficult he perceived we must have found it. And little touches like that, lovely, really, really nice.

Shes had the corrective operation and shes doing really well. Shes got future operations to come, we know that, and we know that they’re not without risk. Between operations we try to ignore the operations as best we can, a sort of coping mechanism as much as anything else. Every now and then you do get the negative thoughts, though. The kind of what is going to happen? At the beginning we were told that shed have normal life expectancy, shes probably be able to have children, you know theres nothing about her heart that would mean she wouldn’t be able to have children, have a normal life.

Every now and then somebody says something that you think, maybe that’s not true or maybe that’s changed or maybe that won’t be the case for her. How much that that’s different from other children and thinking about them maybe getting run over by buses or maybe getting a childhood cancer or whatever else, I don’t know. It’s just because you’ve got something to focus your anxieties as a parent on, perhaps. But I do think what happens if one of the operations in the future goes wrong? What happens when, shes got an artificial bit, a bit of tubing in and when that gets replaced what happens if it doesn’t work, what happens if And you can always live a ‘what if life but when I think about it, you know I think about it a bit and pray about it and then I leave it and move on. But yes, those thoughts do happen and do occur and I think everybody, well I know all the people I’ve talked to have similar doubts and questions and worries about the future. But if you think about it in the cold light of day when you’re not having one, other people, well you have the same worries about healthy children, it’s just that you’ve got something to focus your worries on, the fact that they’ve got a heart problem. And it doesn’t help them or you to get on with life to focus on that so it’s much better in the long run to take every day at a time. You don’t improve your life by worrying about what is going to come tomorrow.