We had the respirator training at the new house today. It was about an hour and a half of lecture, but I was a little nervous. I was already worrying in my heart, “When I have to use it, would I be able to do it?” But whatever it is, I have to give it all for Hajime!
Just like that we didn’t have time in the morning and we got to the hospital close to 3pm and we have physical therapy right away.
It was a review of yesterday, to put Hajime on a wheel chair using a lift and my husband did the whole thing through by himself. I held the ambulatory bag. We were both told “Good job!” and reassured.
Afterwards, we took a stroll!
It was really hot in OC too so I thought Hajime can only spend a little time outside but he stuck it out there fairly well. A little while later we went inside the air conditioned hospital and spent a little time there on his wheel chair.
During that time Hajime talked a little with his dad. They were talking about the mobility that he has left. Out of it all, the thing that shocked me was the fact that it’s getting difficult for him to open and close his mouth. It reminded me that the disease does not know to stop and it’s progressing at a very high speed.
I talked a little about this with Hajime. Hajime said that he’s “scared”. He said that his body gradually losing its mobility, that fact alone is very scary. When I think that in a little while we can’t even have a conversation with his mouth, it’s very difficult.
Hajime is fearful about how his whole body will be losing its mobility, but I talked with him about when that happens we could think together about what Hajime’s happiness is.
At night the family goes home and after that Hajime says that he’s “lonely”. I think that it must be noisy and annoying when the whole family is at the hospital, but I guess it’s a time of happiness for Hajime. Looking at Hajime with a very nice expression, I said,
“Thank you for being born.”
I really think that it’s the most fortunate thing to have a son like Hajime.
I told Hajime about that.
Hajime cried and cried. He probably has this feeling that,,, he’s burdening the family.
I told him… not even remotely.
If Hajime didn’t have this disease, would we have been able to feel such happiness?
It was a moment that I felt that God can bring us happiness at any time, no matter what.
Translated by CS