Huntington’s is not like other illnesses in one specific way, and it is the way that mattered in that kitchen.
It is autosomal dominant. Every child of a parent who has it has a fifty percent chance of having inherited the gene themselves.
Me. And Rhiannon.
A coin, flipped before either of us was born, that nobody had looked at.
My father has known for three years and one month and he did not tell either of his daughters.
And now Ethan’s part.
Ethan drove him to that appointment.
Dad told me he was going to see about his back. He asked Ethan for a lift because the hospital is fifty minutes away and he did not want to go on the bus, and Ethan said yes, the way he says yes to everything.
And then the consultant came out into the corridor and asked whether the gentleman with Mr. Ashbury would like to come in, because they prefer somebody to be there.
So Ethan was in the room.
He found out that the woman he had already bought a ring for might be carrying a fatal neurodegenerative disease, in a consulting room, sitting next to her father, on a Tuesday afternoon, because he offered somebody a lift.
Afterwards in the car park my father asked him not to say anything. He said he needed time to work out how to tell us.
Ethan gave him three months.
Then six. Then a year.
He has been asking him to tell me, and my father has been promising to, for three years.
Here is the part I had to sit down on the kitchen floor for, next to the suitcase.
Ethan was not refusing to marry me.
He was refusing to propose to a woman who did not have the information.
He told me that night, and he could barely get through it: if he had asked me, and I had said yes, and then I had found out afterwards that he knew — then every single thing about our marriage would have been built on a day when he had more facts than I did.
And he said: “You might have wanted children with somebody else. You might have wanted them sooner. You might have wanted to get tested at thirty-two instead of thirty-five. Those were yours to decide and I was sitting on them.”
I was furious with him for about eleven days.
I want to be honest about that, because people hear this story and they go straight to how romantic it is, and for eleven days I could not look at him.
Three years. Every holiday. Every conversation about the future. Every time I cried about a ring, he knew.
What finally moved me was something Rhiannon said, and she was angrier than I was.
