Living Stories: Home page

People > Families > 

Mary SMary S

Mary S

Play MP3 audio clip

Finding out: So he went into Jimmy's at nine months old and he was in a week. They took blood tests from him. When I could take him home, they came to me and said, 'He's got haemophilia', which I didn't know anything about, never heard it before, the name, 'And you must take him home and wrap him up in cotton wool'. I said, 'Well, how do I do that?' He says, 'Well', he says, 'That's something you'll have to find out'.

Play MP3 audio clip

Family relationships: I always felt guilty at giving Colin haemophilia. I shall always feel guilty about that, I shall never feel happy about it, because he would've been such a good lad. I spoilt his life, didn't I? And then again, I wouldn't have liked to have been without him, but I'm so sorry that I gave him that horrible gene. My Bob knew what I felt like.

Play MP3 audio clip

Secrets and stigma: He didn't like anybody looking at him, the family, his cousins. He used to be a bit resentful of them looking at him. He always felt inadequate and he felt dreadful about it. He wanted to be like them. That's what he wanted. The resentment was there. He hated what he'd become, he hated everything about it: right from his haemophilia down to his HIV and his hepatitis C that he got.

Play MP3 audio clip

Secrets and stigma: Soul destroying, really, when you've always been so careful about looking after them. That's when he said he always felt dirty, didn't like it. He would say, 'Close the curtains, Mum, I don't want any of those lads looking in'. Because there was quite a lot of resentment going about. Colin would never go out. Just a wasted life.

Play MP3 audio clip

Death and loss: He'd spent all his life in and out of hospital and he didn't want to die in hospital, he wanted to die with me and I had promised him. And I said, 'It's all right, I'm all right looking after him, I don't mind'. It was a privilege to look after him. He was mine. I gave birth to him but I was there when he died, and it was a privilege. I just miss looking after him, actually. I miss him very much.

Play MP3 audio clip

Expectations: I do have compassion for other people, not just myself, so I do try and help other people. But they have been very, very good. The only thing is that I had so much helping Colin over the years, that it's difficult to live without him really. I miss looking after him. But they've been very good have my friends, yes, yes. And it's up to me, I've got to get strong and do what I have to do, what's left for me.