Yeah, but he loves it, he absolutely loves it. I felt really bad at first taking him. I thought, ‘Oh’ you know ‘I can’t really do this to my child. But he absolutely loves it. He just ‘Bye. He doesn’t give a monkey’s, he absolutely loves it. And, yeah, hes doing ever such a lot more, you know, when hes playing. Like before he used to just play with the same old toys over and over again but now he gets the cars out and ‘brmm, brmmm’ and it’s just loads of little things. And hes, and hes always in the garden and digging and stuff and he never did that before. And, you know, hes obviously watched all the other kids do it and you know hes really catching up now. He does, he does loads of little things that he never did before and, you know, and it’s given me a bit of time as well. Because I think it’s, and I’m sure that other mums have said this to you but you feel really bad about taking them to nursery because they have got problems and you should be looking after them but you’ve got to remember that if you don’t have a break and have some time for yourself it just consumes you, it really does, and that’s not healthy for anyone. You know, and plus it’s good for Joe, he doesn’t want to be stuck at home with boring old mum all the time does he? You know, he doesn’t want, hes probably bored stiff with me all the time. He loves going out with his mates and going off to nursery.

And physically is he any different ?

Physically I’ve noticed that Joe is different from other two year olds, I have noticed that. And I have noticed that since he was born, that he is different from his peers. And at first that was really, really hard to take on board that was. It used to really upset me. And people always think that hes a lot younger than he really is. And hes a lot smaller than other children of his age and he doesn’t do half the things that other children of his age do and a lot of that is because he was poorly and a lot of it’s to do with his other problems. But physically, he is different from other kids but that’s OK, that’s just Joe. You know, hes lovely. And everybody loves him, they do. Everyone that knows him really loves him because hes such a character. He really is and everyones really fond of him. But since hes been going to nursery physically I suppose hes more active, yeah, a lot more active. And hes walking a lot now but he didn’t walk when he went to nursery. He was two and he still didn’t walk when he went to nursery.

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.

His developments was always a little bit on the slow side. He was late to reach all the milestones. And I found that incredibly worrying at the time. He was my first baby, I had nothing to, I had nothing, no nothing to mark, mark the standards by and therefore I read all the books and if he wasn’t doing something by the end of the, the end of the stage that they gave you I would start to worry and think something was wrong.

And this was always the way. He was late to sit up, he was late to walk, he was late to crawl, everything. Everything was late. And I convinced myself that there was something dreadfully wrong. I went through the, ‘Oh hes, hes dyslexic, hes autistic. I, I put myself through, through agonies convinced that hes got brain damage from the operation. I was convinced something was wrong. As it turned out nothings wrong, he a, hes a perfectly wonderful, normal, bright boy and hes doing wonderfully well at school. And so I put myself through all those agonies for nothing.

Hes form captain for his class for this year, which is really nice, gives him a bit of responsibility. The teachers say hes doing really well. He keeps up well with his school work. Hes a bright boy and hes very happy. Hes got, hes got good friends and he enjoys school, which is wonderful.

Mother’I mean the other thing that I’ve felt I’ve really pushed for my daughter and it’s not, it’s not really because she had the stroke it’s more about the fact that shed been in hospital so her muscles are weaker and shes had all the surgery across her chest so, you know, they expect her development to be a little bit behind but shes under a paediatrician just to assess her development regularly because I was frightened that shed get to maybe a couple of years old and then they’d realise that maybe somethings not as should it be and then it’s harder to put it right then

How did you find out about setting that up? How did you know about it?

Mother’Well, I asked my Health Visitor because when she went to see the doctors and that they just said ‘Is anyone assessing her development?’ and I said ‘No. I mean she had her normal checks with my Health Visitor at 6 and 9 months and things like that and like, you know, little hearing tests and that they do but then I don’t feel they’re adequate for a child that’s been very poorly. I mean she was having a physio as well, that was from the neurology side of things.

Father’You see, the, the problem is they spend that much time in hospital that walking and crawling and, and even sitting up…

Mother’is delayed.

Father’Is delayed because, because they spend most of the time lying down. I mean, [our daughter] my daughter was assessed a couple of weeks and although she was sort of behind in, I mean she wasn’t crawling at the time but she is now, shes not walking although shes 15 months. But, you know, shes behind in that respect, socially shes not. Shes quite, they said shes doing quite well, isn’t she? Shes sort of doing things like that an 18 month old should be doing.

Mother’But it wasn’t the actual Health Visitor that organised that because I asked her about it and she organised it, didn’t she? And shes also organised somebody to come into the house and do play work with my daughter. And shes going to come in once a week and just do learn through play.

One of the other aspects of cardiac babies that I was told by a senior registrar ‘en passant’ was that they often are very small and don’t grow for a long time. But that I shouldn’t worry about that, that it would all right it’s self sort of by 3 or 4 years. And again you didn’t, I didn’t want to hear that at that time. But he stayed in baby grows for age 3 months until he was a good 6 months and in the 6 month ones until he was a year and he was always small. And it’s only now that hes turned, just turned 7 that hes in the taller part of the class. So he was always in the 25th percentile or smaller and it was only when he sort of turned 3 or 4 that I remembered what that senior registrar had said. And took comfort in the fact that in time hed just be normal.

So whereas everybody was saying ‘Oh, at two hes this height and therefore hell only be 5’ 7 when hes an adult and I kept thinking ‘No, it’s not going to work for him. And now hes tall and well have to see.

And then we were given monthly appointments, which was a big step and from that point really everything has been as normal, as with any other child. You know, the operation period of about a month was, was very, very, very difficult but when it comes to Alex’s physical needs shes just like any other child. Apart from the fact that she has got a heart condition that will need long term monitoring and treatment. When it comes to day to day feeding, growing, playing, moving shes just like any other child. Shes now at playgroup and playgroup do not know that she has a heart condition. This is a very conscious decision of mine that I don’t want her to be labelled as, ‘the heart child because people don’t really understand very well what a heart child is these days. I think they tend to think that a lot of heart children sit in the corner, can’t do P.E. and have blue lips all the time. That isn’t the case with all heart children. In fact a lot of them lead perfectly normal lives. I don’t want people to treat her any differently. That’s a desperate need of mine.

He actually got on fine. He quite enjoyed the idea that he had other children to play with because like I say hes with us all the time. His big sister’s like eight years of difference so it was, it was a whole new experience. This place where there was so many toys, so many other children he got on with most of them. I mean, there are, obviously you are going to have clashes with, with some people, typical nursery but he did enjoy it. He enjoyed the stories because we, we started him from very young giving him a bedtime story so he knew about sitting and listening. He enjoyed playing with different toys that hes never seen before. As I say, the only thing, with children like that who go through those kind of things you have to build their confidence and that’s basically what it is, it’s confidence building. And when they’re confident enough, you can leave them. So that’s what I was doing the first year, I was building his confidence. And it did work because I mean the first two or three days he was like keeping a hold of my trousers. You know, he was, he was clinging and I had to go everywhere that he went but as the time went on I could get further and further away like, where I would go and sit down and it was like what he was doing, he was coming for reassurance. He knew I was sitting there, he would go away and play and then sometimes hed come back and say ‘See what I’ve done mum. So it was like he was getting reassurance that, yeah, he could go and play and I would still be there until it got to the bit that I managed to eventually, I can leave him now. But you do have to build their confidence they’ve, they kind of lose trust in people when they go into hospital because theres that much different people roundabout them and so much stuff getting done to them that they do lose that. So you’ve got to be there to rebuild that. And if you can just take your time it helps, it works.

Luke went to a mainstream nursery and they were very good with Lukes needs. They treated him as best they could as a healthy child but taking into considering, consideration his health. He also went to a mainstream school where he had a one-to-one helper and they was brilliant, they was very understanding, nothing was too much trouble. In fact he used to go to bed in the afternoon because he was tired. But rather than him getting into a routine of him coming home he used to go on a little bed. He just used to say ‘I’m really tired’ or ‘Can I go to sleep?’ and hed potter off and get on the bed. And it wasn’t a problem. They knew, and the other children just totally accepted ‘Oh is Luke tired? Oh hes gone to bed. Oh, OK. And that was it. So everybody has been really helpful, friendly;

They was very helpful, very supportive and Luke loved going to nursery. He was and the kids were really good. Luke went with NG tubes and it wasn’t a problem. It was like ‘Oh what’s Luke got up his nose?’ ‘Oh it’s to help him feed because he doesn’t eat his dinner. ‘Oh you ought to eat your dinner, Luke. And they moved on and they never, hes just, children just accept things the way they are. They ask questions, as long as they’re told the basics that’s all they need to know.

Hmm;

And then Luke started school just after his fourth birthday and he started full time into a mainstream school and he loved it. He wasn’t the brainiest of children but he loved it. He did do really well. He came on, he blossomed really. He was in the school Christmas play. His confidence grew. He was very, he wasn’t shy that he wouldn’t speak. He just didn’t, he lacked confidence. And his confidence really came on. He had one-to-one help with the physical side of things mainly. The stairs, things like that. There wasn’t any steps other than the steps to go outside but like, children lining up in a queue to go into assembly or for lunch, children push. Lukes balance was very poor so Luke would have been pushed over. So he had one-to-one care for all his time at school. And he needed help, he had concentration problems a well. Luke needed like ‘Come on Luke, you need to do this’ or to keep bringing him back to him. But there was times when he sat on his hands and said he couldn’t use a pencil because hed got no hands. And it was because he, he found gripping a pencil difficult. So they used to make exceptions and give him a big chunky crayon rather than a slim pencil.

But he was included in as much as his ability would allow him. The same as the other children. He joined in with everything. There was nothing that he didn’t join in. He did join in with everything;