A too large five year old fills a cot whose sides are raised. His limbs move unpredictably and without purpose. He plays with a six-month old’s bright rattle.
His Mum is Ebony, solid and calm, about thirty. She tells me some of the story of Simon, her boy, naming a heritable syndrome of faulty collagen that causes joints and bones to break or dislocate.
But Simon’s bigger problem is the stroke that affected him in utero. Ebony felt turbulent convulsive movements in her belly when she was 20 weeks pregnant. Her tummy had swelled excessively, a sign of polyhydramnios, a hint of underlying abnormality in her unborn child. An urgent MRI showed cysts in both sides of the baby’s brain. After Simon was born he suffered seizures. It took two years before the doctors found the right medications to control Simon’s fits.
Ebony tells me all this levelly, undramatically, without reflecting on the strain and the burden she bears for this child she loves. Somehow too, she shows me she is not denying that strain; simply this is Simon’s story; she, Ebony, is not the story.
Scanning the clinical notes I gather Simon and Ebony live alone. “What about Simon’s Dad, is he part of Simon’s life?” – I wonder.
“Yes. One day a week… he left six months after Simon was born. He said it was too much for him…he’s a social worker.” A smile, not bitter, but of learned knowing.
“I started studying Art while Simon was in Respite. My work is showing in Perth at the Biennale. I sold a picture!”
Another smile, this one of delighted pride.
“The man who bought it was a senior man in the government. When he discovered my opposition to our mandatory detention of refugee children he told me he wouldn’t have bought it if he’d known that.”
At my request, Ebony pulls out her portable picture gallery, a series of images on her phone. I lack the vocabulary for the power and originality, the life, in these electrifying images.
“I paint on paper in oils.” I can see from her phone how the oils give a vividness to Ebony’s pictures.
She continues: “I said to that government man, ‘You can have your money back if you want to return the picture.’ But he hung on to it.’” Another Ebony grin.
“And Mr. Morrison, the minister in charge of that cruel policy, he wanted one of my images for his Christmas cards. I said, ‘Sure. You can have the image free of charge. Just change your policy first.’ He sacked the man who took that message to him.”
I read Ebony my blog piece – “How We Killed Leo”. Ebony gasps when I read of Leo gifting his organs: “I knew Leo. Down Geelong way, we all did. We all loved him. Such a good person. I never knew about his organ donations. And now we’ve lost him.”
Two minds in unexpected harmony.
We look down at Simon who continues his sporadic horizontal calisthenics. His belly is large, oddly misshapen. As if it were filled with tumours. I ask Ebony some doctor questions. She shakes her head to all my questions until I ask about the boy’s bowel habit. “He hasn’t pooed for a week. Geelong Hospital sent me to the city because they know him here. They’ll do an enema here and then we’ll drive home.”
I make some calculations: nine hours from her door and back. Nine hours of time and waiting and caring. I look at Ebony and she smiles: “It’s a relief. As long as Simon’s alright…”