Apr 17, 2012

Keep making excuses

These past few days Hajime has been sleeping during the day.
I wonder if he has given up because he has lost any means of contact with the outside world.
Every day my husband has been working on a device to help Hajime communicate his thoughts to us, but it has been difficult to complete. It will take just a little while longer, but Hajime has been unable to tell us anything.

He is taking a new medication to help him stay awake longer during the day, but I don't think it is working and he has been sleeping a lot.

He doesn't need the TV or any music...
He must feel so lonely.

Once, his doctor suggested that we plan some set activities for him on certain days of the week, but we still haven't done anything.
We really are terrible parents.
I know it's an excuse, but I can't move my body as I want to because I am so tired from taking care of him every day.

But if I just keep making excuses like that, Hajime is the one who suffers. I must do better.

I want so desperately for Hajime to spend his days living life to the fullest possible without any regrets, but what we are doing is, in fact, contrary to that. I was once told that I should think a little more about doing things for Hajime.
If you are looking at us from the outside, it can look like we aren't doing enough. We know how quickly his condition is progressing, but we aren't getting up and doing anything.
I feel so guilty.
Both my husband and I have so many things that we would like to do for Hajime, but it has been hard to actually do them. If we don't hurry, he may not be able to see anymore.
Before that happens, I want to arrange for Hajime to have some contact with people outside our family...
I feel like these are just thoughts in my head, and my body can't act on them.
So every day my husband is working hard at finishing Hajime's communication device, but it is tough because he has his work too.
.......But that is another excuse, isn't it? I.....

I tell myself I have to be more positive!
well, there are someday that think negativily.
But there is no change in the love I have for Hajime.
I will do as much as I can for him, from my heart.

That is what I'm thinking as a mother.

Translated by MS

1 comment:

  1. Please do not feel that you are terrible parents. You and your husband are extraordinary parents and you surround dear Hajime with love and care.

    The thing that is terrible for Hajime is ALS, not his family! You are doing your best. You have physical, mental, and emotional limits because you are human. You are doing a lot more than many parents would be capable of!!