Can you remember how you felt when you had it sort of confirmed?
It was a fifty fifty thing really sort of ‘oh at last, but oh my god’. It is sort of … it kept going over in my head, at last, oh my god, at last, oh my god and you sort of have waves of euphoria come up because at long last you know, that you are not a neurotic mother, you know there is something and that everything you have been saying there is some truth in it but then when you sort of get those feelings out then comes, ‘oh my God what now?’ feelings. I was scared. I was scared. You feel a failure because you think you have done it. And if you had done this, or if you done that, or … you know if I hadn’t worked right up until two weeks before I had her, or if I had ate more fruit, if I had done this, you go through this horrible, horrible process of guilt and even now twenty years on the guilt is still there because you still feel, just like a film you are watching this whole thing in front of you, a whole lifespan of somebody with this condition and you think they come from you so you should have done something to prevent that happening.
I am starting to accept there is nothing, the more I see now, the more medical advances and the scientists and more or less I am starting to realistically to believe ‘oh it is not my fault’ but you still have that bit inside you thinking ‘oh I could have done this’ or ‘I could have done that’. And then the process for me and I don’t know if it is the same for everybody is I went into overprotective mode. You know, and I sort of was hell bent on I was going to get what I want and I want it now sort of process that no doctor, or no headmaster or authority officer was going to tell me ‘no’, because I was full of anger and it was just like a process of so many emotions, anger, possessiveness. Thank God for that and it just goes over in circles, you get rid of one emotion and the next one comes and the next one and you seem to go back to the beginning and that first thought comes again, but after a few years it does subside. It is still there. I still feel guilty. I still feel angry. But whether I have learnt to control it or not show it or deal with it better, I don’t know. But a certain amount of anger because you do say, why me, why Nicola?
But the more you find out the more that you realise that it is one in five children so it isn’t only you, it is only Nicola. And you can’t say ‘why me, why Nicola?’, because there is so many more out there. And thankfully in our case Nicola is borderline; on the disorder spectrum she is mild to moderate. Whereas some of the children that Nicola has mixed with or I have come into contact through the years would be on the maximum top end of the scale and I don’t know. I just don’t know how I would have felt if it was that.
So lots of the time I lay there, I lay in bed and I am thinking ‘oh why me, why me, why Nicola’ and then I think ‘well it could always be worse’. So the emotions are still in turmoil. It is still up and down, up and down, good days, bad days and then now Nicola has got older and this is terrible, I shouldn’t say it, and I shouldn’t even feel it and I know that I shouldn’t feel it, but I think to myself, ‘oh my God this is the rest of my life?’ and how bad is that? A terrible thing to say because I shouldn’t feel it, but I do and I can’t help it. Some days I feel very angry because this is the rest of my life and there is never going to be a time when Nicola doesn’t need me.