She enjoys exercise. She eats healthily and also she does tennis lessons, dancing lessons and swimming every week. So theres no sign that her heart isn’t working properly or else she wouldn’t be able to do these things and I like her to keep fit and healthy as well, as a normal child I would anyway but especially with her heart problem to get plenty of exercise. She also started school and she goes to PE three times a week there. So shes getting plenty of exercise all through the week;

So as I say she leads a normal life. She eats healthily and she does plenty of exercise and shes never gone blue. She gets a little bit out of breath sometimes. I think that’s because she puts so much energy into what she does. She runs to school. She runs up the road. I don’t let her cross it by herself of course. But shes always running about and jumping about. She got plenty of energy. Shes never been lacking in energy even as a toddler and shes never been pale. Shes always had a fairly good complexion with rosy cheeks and shes never looked anaemic. Shes never had dark lines around her eyes. Shes never looked as if as shes lacking any, any nutrition;

Mother’I think, I think the one thing that I still find quite difficult and I haven’t found an answer to is the fact that, and I don’t know quite why it happens is that whenever he gets a cold he just can’t seem to get rid of the phlegm. And its this sort of, the only way he seems to be able to clear it out of his system is through being sick and vomiting. And he only vomits because the coughing is so violent that it empties all the contents of his stomach and that’s the only time then that the phlegm comes out in that.

And I just feel that I really would want to know is there an answer to this at all or is this gonna happen forever, is this because of his heart condition that you know whenever he has a slight cold or anything that

Father’It just brings him down totally doesn’t it?

Mother’Yeah completely, totally, hes out of action for about sort of seven to ten days and um, and its just amazing really, its just a cold or its just something really simple like that.

Father’It’s just been a cold hasn’t it really?

Mother’Yeah and he just totally goes down.

Father’Yeah, yeah.

And how often does he have colds?

Mother’Now its getting kind of less.

Father’A bit isn’t it.

Mother’But winter’s coming but I would say at least once every six weeks.

On sports day. Luke actually joined in with the first sports day just before he was five. It was school sports day and all week, the week prior, Luke was upset he couldn’t join in. He couldn’t run like the other children. His poorly heart wouldn’t let his legs work. We had tears at night. And it wasn’t a problem. Luke didn’t have to join in. He could have sat on the side and watched; It didn’t matter. I went to school and spoke to the teacher and said ‘Look Lukes crying every night. He doesn’t want to join in, he can’t run. And she said ‘But he is wanting to join in when hes here. He is doing his best. Were not pushing him. He knows he doesn’t have to join in’;

So I told Luke that the following day, sports day, he didn’t have to join in. If he didn’t want to do it you don’t have to do it. Mrs O’Brien won’t be cross, it doesn’t matter. You do the best you can and mummy will be there, mummy will be proud whatever. And the following day me and my mum went to sports day and Luke sat with his friends and the running races come and Luke was taken to 3/4 of the way down the track and the lady behind said ‘Ooh, why’s he half way down the track? That’s not fair. And I didn’t say anything. It was like ‘Well we know the reasons why’ and the whistle was blown and off they ran and on the practices apparently all the children had overtaken Luke and Luke had sort of come in last. But where he got his strength from, his little legs ran and ran and he actually came first so he got a certificate for coming first;

So it was, we cried. It was very emotional. He was so proud that hed ran. We were so proud that he wanted to join in that hed ran. But to actually to come first, yeah, hed only ran a little way but for him to do it was amazing. And that really boosted Lukes confidence;

Mother’I think that the other thing that’s a little bit more difficult as he gets older is that he, becomes much more aware and hes socialising more and hes got his little friends at nursery and that and hes got an older sister who is running around, bouncing everywhere, wants to do daredevily things with him like jump off the top bunk and stuff and he can’t do it. He wants to join in and he can’t do it and that’s kind of him now having to deal with it.

And hes also learning to communicate as well in sort of short simple sentences and things and I think that’s the thing that I’m finding quite hard is dealing with kind of you know his sadness in some ways at not being able to do some things or join in.

Father’Hes pretty good though, hes not, I think he sort of realises he can’t do as much and then hes fine you know if you just pick him up and make him rest he sort of realises he needs to rest. He is very good like that.

Mother’He sort of goes over into a crouching position and he does this quite a lot, when he knows he needs to rest or whatever hell just, hell just sort of bend down and it seems to be in either a squat position or crouching down.

Father’On the floor.

They have a session at the end where they sort of play with the bikes and things like that, and hes quite happy to join in there. But he won’t race around like the others will. In some ways it’s quite nice because hes not quite as hectic, you know. But he just, he seems to know his own limitations, you know, when hes had enough, he will sit down, you know;

Sometimes I feel he, maybe he feels that hes missing out a little bit, especially in the summer when were in the garden, you know and they’re all playing and you can see hes like, I can’t quite cope with this. I’ve had enough. But I then just tend to sort of spend a little bit of time with him and we sit and watch the others, and we laugh or well do something else, you know. He is quite a one, hell love to sit down and do a jigsaw. So if the others are racing around in the garden or something and hes had enough, well come in and we sit down and well do a puzzle. He likes that, so. But all in all, hes very well and he can do just about anything that the others do;

He was happy. He loved Bob the Builder, Noddy, Postman Pat. Bob the Builder was his favourite. We took him to see the Bob the Builder live show. It was a week before his operation, last year so I’m really pleased we did that. He was such a chatterbox, he was very determined. He used to get frustrated because he couldn’t do things. He used to get frustrated because he couldn’t ride his bike but he persevered and he could ride a bike with stabilisers. Not as fast as other children but he could.

And about two weeks before he died he learnt to go on his scooter properly. He used to stand on it and we used to push him around the garden but he learnt, hed mastered his scooter. He was very slow but he mastered his scooter. He used to struggle with the stairs, he used to get frustrated because he wanted to go to the toilet and he couldn’t walk upstairs quick enough, we had to carry him upstairs because he used to get so tired and breathless. And he used to sleep an awful lot. He used to be in bed for half past six at night. And other kids in the summer would be out playing and Luke would be in bed. That used to upset me. Hed sleep for 12, 14, 15 hours a day. Sometimes more, especially if he was poorly;

He was such a lively chatterbox and an entertainer. He was, his imagination was amazing. He was like, so imaginative, I don’t know where he got it from but he was so imaginative. The things he was, he used to come out with, he used to pretend he was a magician and do little shows for us. It was so, we could see what he was doing but we had to pretend that we couldn’t;

But he lived a very full life. He lived life to the full, within his limitations he. I’ve got no regrets, theres not one thing that I could say ‘Oh if only I’d have done’ or ‘If only I’d have took” and we did it. If Luke wanted something we did it. If Luke wanted to go somewhere we did our uttermost to go and I’m so pleased, looking back, that we did. I’ve no regrets on that side of things. Luke did everything he wanted to do.

And we went everywhere we wanted to go. Theres no, we did so much with him in such a short space of time and I’m so pleased that we did;