How do you feel looking to the future now? What are your feelings about life with Lily in the years to come?
Oh, great. I know Lily will have problems. We don't know whether she'll be able to, she'll never be able to drive. She's going to have obstacles - none that she won't get over though. I worry about school.
You know, will she get picked on because she looks different to other children, because of her eyes? But then I think, you know, all children get picked on and bullied for different reasons, it's not because Lily's, you know, it might not be because of something medically wrong with Lily.
But I really, I believe Lily's going to do really well, because she's stubborn like I am and she will drive, she's got the drive to do it, and she will push and push and push. And I'll make sure she'll get there. She will get there. Definitely. And the other children, they'll take her with her, so yeah.
It worries me if anything was to happen to me what would happen to Lily. That really does bother me. It's really selfish, but nothing can happen to me until Lily's established and independent. I mean, the other two I know will be independent because they're very level-headed, but I've got to live long enough to make sure Lily is, so that I've got no worries. But yeah, it definitely makes you look different.
Does it make you consciously do things like, I don't know, drive slower, or...?
Yeah.
Or look when you cross the road more?
Definitely, definitely. This is completely off the wall, but even to things like if I don't - when my family see this, they're going to laugh, but - I have to turn tea-towels in the right way, or labels have got be round. It's like living with the enemy.
And if I don't do it, I subconsciously think something's going to happen then. So it has to be done. So everything's very like being in the army. It's got to be done in routine, I like routine, and things have to be done properly.
I mean, we've had physio today and Lily cried all the way through it, but I pushed her. She has to cry. If she doesn't do it, then she doesn't walk. If she doesn't walk, then she, you know, she don't get out to the garden. It's as simple as that. You've got to be hard. And don't get me wrong, I go to bed most nights and cry my eyes out. But to other people, and for Lily, you've got be strong.
And you've got to have the drive to drive her there, and if you're, you know, she will get there. If you could have met her, you know, 6 months ago, it's not the same child that I've got today. She's just doing so well, and it's because she's got so much, so much love, so much help, and we just push all the way with her.
Do you really go to bed most nights feeling tearful?
Yeah. Oh yeah, definitely. Thinking, “I shouldn't have done that to her today”, you know - to the point where I've pushed her over on the floor to see if she'll put her hemi hand down to support herself, and she did. But I wouldn't have known that if I'd have done it, if I hadn't have done it.
And, you know, most parents would have gone, “Don't push your child over.” You know, she's crafty. Like most children, she thinks, “If I do this I'll get away with it, because sorry little me”. Well, it doesn't work with me. I'm just as hard, probably harder on her than I am on the other children, because I need to be. She needs to be, you know, it's horrible out there, and I want her to be strong, you know, and be level-headed. And she ain't going to get there unless I push her all the way.
But I do go to bed and think, you know. It's exhausting, it is exhausting. I'd like to, you know, I'm still young, I'd like to go out with my friends and at the drop of the hat do this. Or sometimes we have days just for the other two children, where I leave Lily at my mum's and the day is just for them. We take them out to the coast, and I leave Lily behind so that, you know, they get my time and she doesn't.
But then I feel guilty with Lily, because I think that's a whole day I've lost out when she could have been in her standing frame, she could have been doing this. So yeah, there is a lot of guilt, still a lot of guilt involved.
Do you keep that to yourself when you go to bed?
Yeah.
Or share it?
No. No, that's mine. I'm very like that. I don't like to upset other people. And if I can get over a hurdle without any help then I will. And that's just the way I'm made. But I don't, and it's selfishness and all, because I don't want anyone to take the praise for Lily, which is an awful thing to say, I know. But no, Lily's mine and she's only where she is today because of me, and because of her own determination. And I don't want anybody to say, you know, “I done this for Lily”, because it's not the case. |
