It just amazes me sometimes that what she's been through and she's fifteen months old and she still laughs and giggles and, you know - I moan at having something like a headache and [daughter]'s had that many brain operations and different things, and she always comes up brilliantly. She's just brought, as I say, she's, I'm just not as selfish now I've had her.
I don't look, I don't think about the future, I can't think about the future. I take one day at a time. About, I'd say, out of a month, about two weeks out of that month she's suffering with some kind of infection. So really I only have two good weeks a month with her.
On a day to day basis it's very hard. Because of the problems she suffers with sometimes you don't know whether she's crying because of the condition, or because it's just a general baby problem, so you have to go through the whole thing of, “Could it be this? Could it be that?” all the time. When she wakes up, she screams and screams, and it's due to the head problems that she's got.
She has what they call night terrors, and she screams and screams, and it takes about half an hour to comfort her, so nobody has ever had her overnight, and nobody's ever had her for a couple of hours to take her out except my partner, and that's it.
I think everybody thinks that, “Just wrap her up in cotton wool”, but that's the last thing she needs. But otherwise she's, the day to day is, night time's the worst because she doesn't sleep. She has about a maximum of fifteen minutes a day and then she seems to be like she's had twelve hours sleep. And she wakes up about between six and seven times a night, so I'm usually very tired and my partner he works full time, so he doesn't, he's up very early in the morning, so he can't have her through the night so.
How has it affected your relationship? It must have put a bit of a strain on...?
Our relationship, he's, we no longer live together no more, due to the strain of everything really, I suppose. He's here I suppose more times, he spends more time with [daughter] now and with the elder child, because he just comes and does what he does.
But it has put a big strain on our relationship, it did do. It was just the question of not knowing that's the most difficult thing. If somebody could write it down in black and white for you it would be okay. At least you'd be able to get used to the idea. But they can't, they can't give you nothing at all. It's just time. So that's why I have to take day by day as it comes, because she is in, she's poorly a lot of the time, and she's admitted into hospital a lot of the time. So I think my older child suffers a lot from that. |
