Future Thoughts

From the point when we were in hospital and thinking about compared to now, you don't quite imagine this time coming, but I don't spend much time thinking about when we're in hospital. I kind of um enjoy the time we have now and, you know, living for the present, really. Can't really change much about the future so, enjoy the time we have now - we can't change the past either. INTERVIEW 55, Father

We were told that she'd never talk and she… and she does now. I am very anxious for her future without us - she only has us. But she's done, she's exceeded the expectations of all her consultants, so that's good. But yeah, I just take each day as it comes. I try not to look into the future, because it's just too hard. She's just, I don't know, she's an absolute delight, absolutely no trouble at all, really; just such a happy, happy child and we are really blessed. It's just hard going, but she makes it easy on us. INTERVIEW 73, Mother

And you can see he's obviously developing, you know, on his own kind of trajectory, but, you know, seeing these things coming out is really nice. Uhm obviously, I don't want to, you know, wish the day away, but it would be, it would be, you know, really like to see these, these things come along, and it would be interesting to see how much he does develop, and what his capabilities will be. Yeah, I, you know, I just sort of take it as it is - whatever comes. If… if there's more challenging things yet to come as… then, you know, we'll worry about that then, but I don't let the prospect of that stress me out too much in the meantime. INTERVIEW 76, Father

There's some people that say, oh, you know, would I change her? But I wouldn't change them. And I sort of think I would… I wouldn't change her, but I wish she didn't have to have the barriers in life that she's going to have. And I feel very, you know, very sad that some of the challenges that she's going to face - and knowing that, you know, I'm going to be facing them alongside her - I worry about the future for her, and knowing that um our lives are… couldn't be much more intertwined for than, you know, her typically developing sisters. But I kind of think, you know, we will just, you know, work things out just with all other life aspects, you know, going through divorce and all those kind of things, they're all part of the journey. Uh I couldn't tell you, you know, how much I love her! and um how much I do enjoy her despite all of the, you know, things. INTERVIEW 47, Mother

Whatever problems I'm sort of feeling about it, it's more, it's partly still that I don't really know if… well, how it will work out as a family. Uh, things take longer for him to learn, but on the other hand, he's very happy, and I think most of the problems that I'm feeling, or "problems" in quotations, is in my head. He's happy! He's cheerful. He's learning things. Um I can see, objectively, that it takes him longer to get to certain points than it does for other kids um, but he doesn't seem to worry about it! He's well-liked at nursery and that makes me so happy. The other kids sort of treat him as a baby brother almost, and they come and pat his hair and give him toys and they're really sweet to him um and that's really good. I was really worried that he would sort of be bullied at school and not have friends and not be happy. Uhh and I mean, of course, I would like him to be able to walk and talk and express his feelings, but mostly I want him to be happy. Um and I think he is happy! I think he's uh he's generally cheery. He doesn't speak with words all that much, he says, "Mama" and "Pappa", uhm but he can definitely make his feelings known: if he's unhappy, or hungry, or thirsty, or tired, or needs the potty or something - he will let us know. INTERVIEW 53, Mother

Her she gets on really well at school. They've all got lovely things to say about her at school. And she's very kind and she works hard; she tries very well. She's got a laptop that she works with - which she's obviously got things to help her with the memory and stuff. But she's yeah, I think she's getting on really well. She's doing - she just had her mock results and she's doing quite well on them, so she's working hard. But no, she's lovely girl! She's keen to, she wants to get a job and stuff. So, she's trying to look for things now and stuff which obviously is a bit hard for me 'cause I'm like: "Oh, do you think you'll be fine doing that?" But at the same time, I'm like: "Go on then. What do you want to do? And I'll see if I can help you." So, she's quite a determined little thing, which sometimes I'm a bit, "Oh!" but I'm learning. She said to me yesterday, "You're learning to let me go a bit now". INTERVIEW 9, Mother