Even since exchanging tubes last night, Hajime has been fearful.
I was told that throughout last night, he was holding his father’s hand.
He has lost his voice, his muscle strength weakened so he can’t move,
and so he’s probably scared of everything that happens in the hospital.
I have written about the nurse before, well, this is what happened today.
Hajime couldn’t go to school until the end of the school year.
Considering his current condition, we don’t know if he can go to school next school year.
We don’t even know if he can graduate.
The two nurses, the nurse responsible and an assisting nurse come to change his gowns,
but the nurse that assists talks about her son every time she comes.
She said, “My son graduated high schoo~l.”……
It seems like a harmless conversation, but for our family right now in this current situation,
it’s very hurtful to hear. Hajime is also probably thinking that he can’t graduate school too.
Maybe it’s only the nurses here but I’m thinking that they don’t have enough understanding of ALS.
There’s even a nurse that thinks that his tracheostomy tube is a temporary thing.
And they talk about it out loud. A lot of the times we are startled and confused by what the nurses say.
They all don’t mean to.
It is very disappointing that the people expected to understand the most understand the least.
And the hospital staff is somebody that we’d really like to have an understanding.
Through Hajime, I want them to know more about the disease ALS.
I hope the nurse for tomorrow is somebody with more understanding.
Translated by Christine Shirota