Daisy

Thought for the Fortnight

This week’s post follows on from the publication of excerpts from an interview with a hospice chef some weeks ago. That post proved sufficiently popular to make me think that I should occasionally post excerpts from other interviews undertaken in the course of my working life. I worked for years as a qualitative researcher, someone who does focus groups and interviews, rather than analysing hard data. There are loads of interesting and moving interviews on which to draw.

I wanted to publish something about AIDS, another subject on which I have written a book. My initial plan was to publish parts of an interview with a young man talking about stigma and AIDS. But I suddenly thought, why not throw you into the deep end? I don’t know if this requires a ‘trigger warning’, but I think you are all grown up and capable of reading whatever I choose to post.

There is no sex. There is no abuse or violence. What there is, instead, is the death from AIDS of a toddler, moving related by her mother. If you thought that disease was all about gay men and drug-addicts, think again. It caught all sorts of people in its net.

This interview took place in 1991. Daisy had died five years before, aged twenty-one months, having been diagnosed when she was just one year old. She lived with her mother, Sarah (not her real name), and four older half-sisters and half-brothers. Sarah had separated from her bi-sexual partner, having already left an unhappy marriage. None of the other children had the disease.

For those unfamiliar with AIDS, HIV is the virus that leads to AIDS and most initial diagnoses were of being ‘HIV-positive’ or, in common shorthand ‘positive.’ There was no cure for AIDS at the time and a diagnosis was more or less a death sentence. As a result, it was deeply, deeply feared.

In addition to being extraordinarily moving (remember, I didn’t write it myself, these are all the words of a grieving mother), this is an excellent introduction to the huge degree of ignorance surrounding AIDS at that time, including amongst the medical profession.

Sarah tells of the long wait to learn of Daisy's circumstances:

I knew from the first day I met my partner that he was bisexual, he was very open with me. But I hadn't thought about AIDS, because it wasn't really discussed. There wasn't much about it on television or in the newspapers. Most people who had it were gay men. I had no idea that I could possibly get it.

We were watching television about seven years ago – the man my partner been in contact with was telling everybody that he had AIDS. It was really strange watching this programme, seeing somebody you knew talking about this disease. We phoned immediately about a test and went to the special clinic nearby. The doctor wouldn't test me because he said it was highly unlikely I would have the virus. I suppose he felt that women didn't get it having heterosexual sex.

It took six weeks until my partner was told he was positive. I rang up and the doctor just gave me the result on the phone, said “Well, yes, he's positive.” I felt terrified, absolutely devastated – and then I thought, well, I've got to be tested. And it was another six weeks – and we were told over the phone again that I had it.

Daisy was then eleven months old. Of course, we had to have her tested. That was awful, because we had to take her to the children's hospital. They couldn't get any blood – they were really trying and they were just hurting her.

And then six weeks later, I was told she was positive. We weren't prepared, they just took the test and that was it. We weren't offered any counselling, none at all. I was absolutely devastated. I didn't feel angry, I was just in total shock. I felt that I'd done this to my child. Because I did. I believe she was born with AIDS, she had thrush when she was born. But because I fed her for a bit, I felt I'd given her the virus.

The sense of isolation was overwhelming:

It was awful because I couldn't talk to anybody. It was just the three of us, and I had to lie to my children. I just felt my life had come to an end and I didn't know how I could tell anybody about this dreadful illness.

My partner didn't want me to tell my parents about the disease. He wouldn't tell his either. He was very frightened. He was worried about how they would feel about him, they would blame him. I said I don't care, I need my mum, but he begged me not to. So for four years I didn't tell them.

It was dreadful. There were hospital appointments and I couldn't say why. They'd think I'd be having a nice day out and I'd come back shattered – especially when Daisy got ill. I couldn't even tell them what was wrong with her, why she was dying.

Daisy was fine when she was first diagnosed. She was really very well. Just learning to speak. She was a little bit late in walking. But when she was sixteen months old, she just stopped walking. I went to my GP and he referred me to a consultant and they thought she might have a tumour on her spine. So they were testing for all these different things. I really believed that she had a tumour, I didn't think it could be AIDS.

We were in the hospital, I stayed with her for ten days. And one day this lady doctor came in and I said, “Have you had any results back? Is it a tumour?” And she said, “Well, you know what it is, don't you, she's got AIDS.” That's how we were told. I wanted to punch her. I've never felt so angry in all my life.

We were put in this room and the nurses were gowned and they brought Daisy's feeding bowl in and her spoon and they sterilised everything. I wanted to go make her a bottle and the nurse screeched at me, “Get back in that room, you're not allowed out.” They were absolutely freaked out. They just couldn't cope with the fact that they had this child in hospital who had AIDS. They didn't know how to handle it.

And then they were bringing all these other doctors around. About ten doctors at a time from all over the hospital – nothing to do with paediatrics – just to view this baby. And that upset me.

One night I went home because I had to see to my children. The next morning, Daisy was just lying in a bed of blood. They'd done a bronchoscopy and burst the membranes. I said, “What's going on?” and they said, “Oh, we thought you could clean her up.” So they just left this little baby, eighteen months old then, in a bed of blood.

I was absolutely furious. I didn't care then. I just wanted to get out of that hospital. I said, “I'm taking my baby home, I don't want anything more to do with this place.” I cleaned Daisy up and took her home.

The consultant was a really good man, but he didn't know anything about AIDS. We used to go see him once a month. He was very sympathetic and my own GP was wonderful, I couldn't have gone on without his support.

I didn't have much other support. Nobody else knew. Just my partner and myself. He couldn't cope with it. His way of coping was going to the pub, running away. But of course I couldn't, because I had this child who needed me.

I had ten months with no sleep, because Daisy became more paralysed and very twisted. The only way she was comfortable was on my shoulder. Some nights I would long for somebody to come and take this baby and just hold her for me. But you get an incredible strength. I could stay up all night, just walking with her and singing to her.

Daisy's death:

I told my parents Daisy was dying, but I couldn't tell them what was wrong. She became paralysed and I wanted to prepare them. I just said it's a disease of the central nervous system. Having to lie was awful. I really needed my mum at that stage. She'd always been there for me.

Gradually, Daisy stopped speaking. She became paralysed so that she couldn't sit up. She was in great pain, she had impetigo all over her, she had thrush, she'd get diarrhoea. She got pneumonia in the end. But the thing that kept me going was right up until three weeks before she died, the one thing that she could do was kiss. And at night when I'd be carrying her, she'd be going [kiss kiss] like that, as if to say “It's all right, Mummy.” That just kept me going. And her eyes. The last three weeks she was more or less comatose, but now and again you'd see something in her eyes.

My children were absolutely fantastic. My daughter would carry Daisy around on her shoulders, to give me a break. And my son was the only one who could get her to sleep, he'd sit rocking her little chair. And the two little ones, they did everything – they changed her nappies, they did everything.

I had told them that she was going to die. I said Daisy's not going to live to be grown up. And it was strange, because they were just so involved, they gave her so much love. They were amazing.

I knew in the morning. She was very cold when I got her up. It was a beautiful day, a really lovely sunny day. But I knew that was going to be the day. So I put on her prettiest clothes and got her comfortable. She used to lie on the settee on a pillow, so I could watch her. Her mouth was locked so I couldn't feed her, but I had a pipette and put it in like a little bird, just to moisten her mouth.

I put her prettiest clothes on and, well, I didn't leave her. And at six o'clock that evening I was cooking the dinner. My son was holding her hand and she'd gone very white. I said get her father – he was in the cellar – and when he came back he was holding her hand. And Daisy just died very peacefully with all of us there.

The lovely thing was that her body was so twisted – her feet were stiff and you couldn't straighten her legs out – and I just watched all that pain disappear. She became perfectly straight and she looked beautiful. Her blonde hair was like a halo, going round her face. It was lovely, because we had time.

I phoned my doctor and he came to certify she was dead. And then the children came and they all held her and talked to her. My little girl, she was only four, said, “I think we must all say a prayer” and then, “but I can't think what to say.” She made us laugh. But each in their own way said goodbye to her. I just said, “Thank goodness you're not in pain, no more pain.”

My doctor had to inform the funeral directors that she'd died of an infectious disease. So when they came, they came in these suits and gloved. They just wrapped her in a plastic bag and took her away. And, well, it just was too much for me. I couldn't cope, I just had to run out of the room.

I'm not religious, really. I don't practise, but I've got deep-rooted feelings. And it did help in a way, because I was happy. I said Daisy's one of God's little angels. I missed her dreadfully because I'd had twenty-four hours a day of being with this baby. I loved the warmth of her on my shoulder, I loved carrying her around. It was like part of my body had been taken. It was gone and I couldn't replace that.

At the funeral, the priest got the children really involved. He wrote this lovely programme with very simple prayers and it just said 'goodbye' to Daisy. It was very moving. My little girl went up and sprinkled the coffin with holy water and they all laid their flowers. They absolutely adored Daisy.

She was a lovely child – really sweet, lovely nature, very gentle.

Sarah died a few years after this interview, having made good provision for the care of her four older children. It is one of the rare cases in my research where I kept in touch with someone I had interviewed.

This interview is in my book, Wise Before their Time: People with AIDS and HIV talk about their lives (Foreword by Ian McKellen), initially published in 1992 and relaunched in 2017.

Over to you: No questions, but comments always appreciated.