I’d always been close to my sister.
When her marriage broke up, leaving her as a single parent to two children; my nephew (aka Eedy) aged 3 with learning disabilities, autism, adhd and microcephaly and my niece (aka Mogs) of eighteen months – also with microcephaly (and the diagnosis of autism yet to come.) I was there pretty often, playing the role of the second adult in their life. Helping at weekends with the parenting and hopefully sharing some of the strain. She coped really well (although she would have described it differently), she didn’t get much of a social life, and couldn’t even think about paid employment, but she resourcefully spent her time studying for an open university degree in psychology, involved in the Guilliam-Barrie support network and co-running the local adhd support group. She was the extrovert of the pair of us – thinking nothing of talking her cause and expertise on local radio and national breakfast TV – citing the perils of living with and bringing up a child with autism and extreme adhd.
By the time the kids were 8 and 10 she was 4 years into her degree work and had her first serious relationship since her marriage breakup. She’d had health problems in the past. Terrible migraines that her GP had misdiagnosed as stress and prescribing anti-depressants that she stopped taking within a week because they zapped her energy– her optician eventually realised these were caused by a detached retina – most probable cause the toy box her son had chucked down the stairs which had landed on her head.
But nothing compared to her final illness. She began to complain of a pain in her left shoulder blade on Tuesday, stating that it was horrific and beyond words. The doctor and NHS Direct gave advice to take painkillers, heat compresses, and don’t over strain. By Wednesday she wasn’t sleeping due to the pain and called me to pick up her daughter from school, as she felt unsafe to drive. More calls to medics and the same advice. By Thursday my then-husband was taxi-ing the kids and by Friday he went back to the house after the school run to take her (with or without permission) to the hospital. They gave her morphine for the pain and admitted her, believing it to be a pulled muscle or maybe a blood clot.
I picked up the kids from school; we visited on Friday evening and said we’d be back the following afternoon.
Midday on Saturday, April 15 2000, I got a call from someone at work; the hospital had rung there trying to get hold of me. I needed to phone them back.
One of those calls that is never forgotten. The fear was due to what they wouldn’t say, not what they would. Just come. Don’t bring the children.
Oddly all I could think about was remembering to turn the grill off. I was cooking fish fingers at the time. I’ve never bought, cooked or eaten them since. They are off the menu. Forever.
I knew, as I made arrangements for someone to have the kids what I was going to face. I even said this as I dropped the kids off. And was told I was over reacting. “Don’t be so silly”.
The hospital staff were sympathetic, professional, thoughtful and kind. My sister had died, aged 34 of necrotising fasciitis (aka ‘the flesh eating disease’). She’d not been ill before Tuesday, died on Saturday under anaesthetic in theatre.
They had made plans to keep her in a coma for weeks had she survived to give her body a chance to recover. But in theatre she’d died. The death certificate stating septicaemia.
I called our parents, they came to the hospital. Later we all went to our separate homes. I picked up the kids and took them back to my house. And told them. Told two children aged 8 and 10 their mother was dead. Their father had left 7 years before and both had autism. Grief is different for autism. They just accused me of joking, asked ‘do we live here now?’ and then went to bed.