I was living in Sydney, Australia the day that my daughter died of a combination of pneumonia, a badly administered anaesthetic following dentistry work and her disability. She died in the room next to mine. I discovered her in the morning.
This is the first time I’ve written about this even though she died in July 2005. She was called Zuzu and she had a form of cerebral palsy called holoprosencephaly. It’s a rare and extreme version of CP. Zuzu was fed by tube. She was unable to sit up or speak. She couldn’t crawl or do anything really other than be happy unless people were being angry. She was very, very happy.
We loved her very much indeed. Once other people had got used to her drooling constantly, and her tube button in her stomach, and the fact that her life was going to be a short one, they grew to love her very much too. People are scared of all of those things and more with disabled people.
Lots of things about disabled children – especially kids with such extreme and obvious disabilities – make people very uncomfortable.
I had separated from her mother a year before Zu died. But we were on good terms. I would look after Zu for two weeks each month, and her mother would care for her for the other two weeks. There was some flexibility in that schedule. The night Zuzu died, my ex-wife was over at my place, we chatted. It felt a bit like we could have patched things up. We didn’t.
I am writing this now because time has passed. I have moved back to the UK, I have a new partner who I love. My ex-wife is still in Sydney with her new partner. She and I Skyped this morning.
I am also writing this now because of a news story that broke this morning regarding the deaths of three children.
The Guardian – among others – reports this:
“A 42-year-old woman has been arrested on suspicion of murder after three children were found dead at a house in south London. The three children – a girl aged four and twin boys aged three – were pronounced dead at the scene.
“The Metropolitan police said a 42-year-old woman was arrested on suspicions of murder after being treated for minor injuries. A Met spokesman said: ‘We are not looking for anyone else in connection with this incident.’
“A neighbour, who did not wish to be identified, said the family, originally from South Africa, moved into the five-bedroom house a year ago. She said the family’s three younger children were suffering from genetic disorders – believed to be life-limiting. An older child thought to be around seven or eight years old, was in good health, she said.”
This forced me back in time to a police station in Balmain. To two rooms in that police station: I was in one with my interrogator. My ex-wife was in another with her interrogator. This was four days after my flat had been turned into a crime scene, which always happens in the case of a sudden death at home, I had been told.
My officer, a woman in her late 20s. I forget her name. We hadn’t been arrested but questions had to be asked. Her first question was:
“Zuzu’s condition was extreme wasn’t it Tim, that must have been very hard for you…”
The room was on the ground floor of the police station in Balmain. I was on one side of the desk, I think it had a green formica-like surface. There was a window, maybe a metre square on my left.
I asked the policewoman to repeat the question because I honestly didn’t believe what she was trying to get at. Everybody knew I loved Zuzu. But bringing her up had been hard, she was right. Other kids were running around, walking, talking, saying that they loved their daddy and mummy way before the age of 7. Other kids didn’t make people haul their kids away in some irrational fear that CP might be catching. Other kids weren’t fed by a tube in the stomach.
She repeated the question and I replied, “Yes, very hard sometimes.”
“I bet it was exhausting too, wasn’t it, Tim?”
She left the room to get me a cup of coffee and some tissue paper and left me to think.
I’ll continue this piece later. I really needed to get it started today though.