This morning Hajime stayed inside his futon, not even trying to go take the examination at school. Hajime has been telling us, “I don’t have to take the examination today.”
Well, what happened was, last night we were asking Hajime about that but we couldn’t finish our conversation.
To Hajime who was still trying to go back to sleep, my husband said with a stern voice, “Just because you don’t have to take the test doesn’t mean you can sleep on a school day.” That’s what he said.
Hajime can’t speak, but he was trying really hard and was saying, “Yes!”
I couldn't understand what was going on so I asked Hajime. “Why don’t you have to take the test? But just because you’re not taking it, it’s not good to skip school.” That’s what I said.
Hajime was trying to tell us, but because of how hectic it is in the morning, we were asking Hajime with a rather strong aggressive tone of voice.
But Hajime was losing to the vexing feeling of not being able to express in words. He was holding his head and crying.
And I thought…., “Oh, what have I said. Hajime can’t speak so he was trying to tell me using text, why couldn’t I understand that, calm down and listen to him.”
The frustration from wanting to speak but can’t. I can’t even imagine how hard it must be. The device that’s necessary to communicate is even hard to use because of tremors in his right hand. Today was a day that I once again reconfirmed the progression of the disease from seeing this kind of reality.
Translated by Christine Shirota (American English)