OK. And, has there been any impact on your daily life, your family life?

Mother;I mean obviously there was, you know, around the time of the operation we felt we couldn’t plan. Leading up to it we didn’t know when it was going to be, it kept being cancelled and we felt you couldn’t plan things and I, certainly, work-wise I took on different, I mean I worked a lot less, you know, and, and didn’t take on work because I wasn’t sure about what, you know, what was going to happen.

And obviously afterwards when she was poorly and needed me around a lot that’s, that, you know, it obviously did have an impact then. But not, not now it doesn’t, no. I mean, I don’t think we would treat her any differently from… Obviously having children has an impact on your daily life but it’s no, no different from having two young children, no. We don’t treat her in any different way now.

Alex’s heart condition does not impact on our daily life apart from the fact that we have to give her powdered capsules. I’m very, very lucky to be able to say that it doesn’t impact on our lives at all. Were very lucky because of the way she recovered from the operation. The operation was very successful and shes doing very well.

The way we understand it is that weve got to look at it as she has a normal life and she will have normal health but she will have to have operations throughout her life. We don’t know how many or when, we can’t tell. Hopefully not too, not many at all. And so it’s the psychological burden that you have to carry from day to day. And not the practical burden apart from the fact that the operations will obviously impact.

And what’s the psychological burden?

Worrying about it. Just, it’s worrying about it.

One of the problems is that when he had to take to time off his employer gave him paid leave to start with but now with, with appointments and things were worrying all the time. He has to take holiday time which of course means that we can’t have as many holidays together. Weve got to come to an arrangement when she is hospitalized again but, so that is another thing. I find it easier being part-time but I’ve got another child as well which is hard to, hard work to organise. But I am aware that you can have 14 weeks unpaid parental leave. Now that didn’t come in for Alex, shes too old for that but the second child we had, actually we can use his time for her which seems a bit crazy really but if were stuck that’s what were going to have to do. Were going have to take unpaid leave. Which is another thing we don’t need but weve got to be there for her and probably I’m going to cut back on my work whereas perhaps I might of taken another route with my career. My career’s definitely secondary now to hospital appointments.

Mother’ And when I, when I say to people now that you know the time I had off with Toby for his operation and afterwards, I had to take as holiday, their jaws just hit the floor, you know. Not only did I have to take it as holiday, I had to make up teaching hours for the year. Ha. It was just like, it’s a shame I can’t say the name;

Father;Yeah well, you can’t, you can’t [laugh].

Mother;But isn’t that incredible? I mean at the time, when I went into see the personnel office with my boss, and he said, oh well, were prepared to give you two weeks holiday and then well give you unpaid leave. You just don’t argue because you’re mind isn’t on the logistics of you know, OK I’m gonna have to make up teaching hours or you know, or whatever. You’re almost not there, you, you’re back with your son at the hospital or whatever. If hed said to you, OK you can take the time off but I’m gonna cut your arm off when you come back. You would’ve just said yes because you weren’t really thinking about it and you know, in hind sight, if I’d just gone to my doctor and said how can I possibly be expected to work through during this period while my son’s in hospital. The doctor would have said, you know, heres a certificate for as long as you like. And when, after the operation when we thought Toby was gonna have to go back in because of the fluid round his heart I went and got a certificate and he didn’t have to go back in then but…

That’s probably something I’d you know, if parents are having trouble with employers, I’m sure a GP’s, I mean what GP wouldn’t sign you off? for something like that.

I think that there was one time when [my husbands] father was quite explicit about what he thought I should be doing and said that and he said that you know ‘a mother needs to be looking after her children, she needs to be at home and they need you, [your son] needs you at the moment.

And I just sat down and sort of explained to him that I’d worked very hard for my career it was very important to me but also at that time [our son] wasn’t sleeping at all and hed been really ill for quite a long time, and I just actually broke it down and went through it with him. And I said you know ‘hes awake all night, I’m awake all night with him and then if I have him all day as well I can’t just keep going twenty-four hours a day, non-stop, seven days a week. And I think it just made him think about it a little bit and, and think about what the reality of it you know might be.

Because I think sometimes its really easy for people, including my parents sometimes you know, you know my mother makes comments about how often I cook or don’t cook or whatever. And, you know when they’re, they’re very seldom here to see what the reality of the situation is like for you and how you can manage to fit in all of these various things and its just understanding that really.

And I think that, I think that the other thing is you know at a practical level not to underestimate you know the impact and the level of organisation that you might need. And I’d say to you know parents who are working don’t kind of just think that the only option is to give up, you know if may feel really hard at times to carry on if you’re not sleeping and you’re going to work and child care feels like a nightmare. But you know persevere with it and if one thing doesn’t feel right you know don’t carry on with it, you know try and pursue other things.

Mother’It’s even going out for day trips, that was, we used to take her file, we had a file that we used to take everywhere with us, like a just in case if she needed anything so that we could have all your help, help line numbers and hospital numbers if you needed anything.

Father’But that was before the second operation.

Mother’Just a minor’

Father’Because we knew it was what was, she was high risk during that time so.

But now do you do that now?

Mother’No. No. Just take her anywhere. Don’t do anything with her in ‘

Father’No, she

So daily life now is quite normal?

Mother’Quite normal, I think in the beginning I was anticipating going back to work maybe part time which I’d put off because I didn’t want to leave her and I wasn’t happy about leaving her with anybody else. There were only one or two people that I ever left her with in between operations for short periods of time. But now shes had surgery were quite happy leaving her and going out for days and just even sending her to grand parents and I think’

Father’Which we wouldn’t do’

Mother’Which we wouldn’t do’

Father’during the

Mother’During the first year my mum and dad wouldn’t, well it’s not that they wouldn’t look after her, they weren’t confident to be looking after her by herself and she, since shes had surgery they’ve felt confident enough to have her and do sort of normal grandparent sort of things with, with the children.

So that first year in between surgeries, you didn’t, you know, you didn’t want to leave her with anybody. [Mother’ Correct] What effect did that have on you as a couple, in terms of being able to go out?

Father’It didn’t basically, not much

Mother’We didn’t go out. I mean I think we weren’t as bad as to say like wed both stay in. And I used to say it, tell you to go out with things, with other people and we did go out separately or wed go round to friends houses rather than go out sort of places and do things. And I think we had a lot more home focused life than we were used to. We wouldn’t sort of pop down to the seaside for the day. Whereas we, we probably would of before. But we can, we can do things like that now.

But yeah, we did feel a bit isolated I think for a while and I think that was possibly when the other two missed out on things slightly because whereas I would have possibly taken them somewhere I didn’t because I really didn’t want to take Sam out in the cold and, you know, was concerned about him. And if anybody had a child and we were going to go and they were ill then I’m not going to risk it, you know. So, we did feel a bit isolated for, sometimes because just, I just did not want to take him out because, you know, he was so susceptible to things that I thought it was better to sort of keep him at home.

But now hes that bit older, a bit stronger really. We do go out quite a lot now and I do, my mum comes to baby-sit sometimes and, I mean, they love that and it does mean I can, you know, get out, just have a little bit of time to myself. But, yeah, you know, it was quite hard I suppose for the first, at least the first two years really. I, I didn’t really leave them at all. I was sort, just wanted to be there, you know. I suppose also for the first sort of 7 or 8 months really he was so in and out of hospital I felt I wanted to make up that time. I mean his first Christmas he spent in hospital and you want to sort of make that time up. And Christmas this year is quite special; It certainly was last year because it was the first Christmas that hed been with us. Wed all been together for Christmas and that was great, you know. So, but no, certainly a lot easier now.

Mother’And then we come home and within a week we went on holiday didn’t we? We asked them if we could take her away and they said yes, so we did. Maybe not everybody would choose to do that. Maybe they’d be a bit frightened by it but we had a lovely time and it was just what we all needed. I think we just needed to do it as a family. It was lovely.

Father’But as I said earlier you sort of get used to your daughter’s condition and you find it easier, you, you know yourself when shes not 100%, so you sort of deal with it anyway. So sort of, I mean going away to somewhere in this, this I mean in this country wasn’t, although the first time we did it, it was a big, big thing. You know it was a bit daunting because we weren’t at the hospital, we weren’t close to the hospital that we were used to, and things like that.

Mother’And the night before I’d convinced myself that she wasn’t well. Didn’t I?

Father’Yeah you had so we had to take her to A&E just to get her checked over. But it was just peace of mind, and, and once you’d got that peace of mind you, you’re OK again. But now we sort of we don’t, we don’t sort of think about you know, is she going to be ill?

You know, OK, let’s book this holiday. And if shes ill we cancel. If it costs, it costs. But I don’t think you can sort of live your life thinking what will happen what, what happen, what, what if, what if? You know you’ve got to sort of get on and try and be as normal as you possibly can. Which is what we do.

Mother’A lot of parents that I’ve spoken to that have got heart children they have all said that that’s the only problem, that they found they couldn’t plan things or if you are going to plan things, expect, if you get there, well brilliant, if you don’t try not to beat yourself up over it. You know these things happen.

Father’Just try again.

Mother’And our next goal is to go abroad with her. And every time we go we ask don’t we, can we take her abroad now? And they kept saying, after her second stage. So when they told us they didn’t think they? was going to do it, it was like that was what upset me more than, as well as the fact that shed got to go through extra surgery, but you know, wed set our hearts on getting her abroad, and then we thought wed have to wait another 12 months, and now, they gave us the all clear to take her away so we booked up to go away next year, and hopefully we are going in January as well aren’t we?

Yeah, I think the one thing that, I remember when Joe was born and the Health Visitor came to see me for the first time and she said that, you know, you have to get used to the fact that from now on this is what your lifes going to be like. Oh god I could of slung her out the front door I was so angry with her. You know, I thought ‘How does she know? Of course this is not what my life is going to be like. But looking back what she said was really poignant because it is what our lifes about now and, you know, and, and our life does involve Joe having to go to the hospital, not just for his heart but for his other problems. You know, and Joes got a lot of problems that he has to see a lot of different professionals about. You know, and a lot of my life is going to this place, that place and the other and, you know, we do have to work round that.

But even though that’s the case and that’s what our lifes like now I wouldn’t say that’s really, really hard or really, really bad or, you know, it’s just part of our life. We don’t even think about it any more, we just do it, we just get on with it. You know, I’ve, I’ve got a really good life now. I love my life and I live my life to the full and so do my children. And part of that is having to go to the hospital and having to go and see professionals and, and having to do all the things we have to do with Joe. So it hasn’t really hindered my life that much.

Even though it’s the hardest thing I’ve had to do in my life and it’s the worst thing I’ve ever had to go through in my life, it has just changed my life, but for the better, you know.

I know what lifes about now. You know, and Joes just fantastic. Hes just changed everybody who meets him, he changes their life, you know. And I think all of us as a family, you know, just have a much richer life now because of what weve been through with him. And, you know, he is a fantastically loving, wonderful, giving child. He is, hes lovely.

And, and it’s, the funny, the funny thing is when you, when you sort of in hospital and, and shes, shes, shes lying there with all, you know, on ITU and, and you think ‘Oh God, just get her home, if she starts moaning or crying in the night I won’t moan I promise, honest to God. You do. And you do and you realise, and it don’t matter what you say you will. And you just, I mean weve laughed about it and we look at each other when you, I mean, ‘cos she, she tends to wake up quite a lot, doesn’t she? And, and you just sort of shrug your shoulders and, it, maybe you’re not as probably as het up as other parents would be but you do and, and I mean and shell get into things now, now shes crawling and, you know, and sort of, you’re like ‘What are you doing?’ sort of thing. And, and its like I say you come home and you do tend to forget. But it’s nice. It is nice and theres nothing, theres nothing better than being at home, as I say. And sort of coming in from work and you’ve got your sort of, your children and your wife and, and just being a family and you never, at, at first when you’re in hospital you never think, you never ever think that you’re going to get there but you will, and you do.