Oct 10, 2012

Fall into a pitfall

We had a great fun time on Sunday. I hope Hajime enjoyed too.
It is always nice to have visitor and cheer him up. Sometime, far friends come more often than people live close.

On Monday night, Hajime was crying with tears. I asked him, what is a matter? Do you have any pain? But he said no. Hajime was frustrating about not able to go out with friends and talk with them. He was wishing to speak again. He was struggling about his current situations. I did not know what to tell him.

It was right after I saw the news about Dr. Yamanaka’s Nobel Prize for iPS research so I told Hajime about this news. This iPS research is rapidly progressing. There was news that medications of ALS candidate have been found utilizing this iPS. I told Hajime that it should come a day that you can speak again. So let’s work out together till then. I know you are already having a lot every day so you don’t have to try hard anymore. Just be with us and get over day by day.

He just wanted to chat with his friends. Just an ordinary wishes for 19 years old boy.
I wish all the best to the Japanese research team to make this wish real. I hope people will be more aware about this disease.

Yesterday, I just come up with an idea of having a charity for Hajime. I asked to my friends for help. We are having hard time paying for all of his medical needs. Many friends replied with yes but at the same time, I learned my mistake pointed out from my friend.
I could write a blog or share a story about Hajime on Facebook but I realized that I don’t have much enthusiasm to run a big project. I take care Hajime, take care other kids and do some housework daily… Actually that is all I can do and I don’t have much energy left to do more.

I am depression. I have a lot of negative feeling. I wish I could pour more love to Hajime,,  I wish I could share more about ALS so that people know more about ALS but I can’t do those things.
My son’s symptom is getting worse daily. He has an infection problem on top. But I can’t do anything for him. I get upset about myself. I don’t know what I want to do.

There was one big reason I did want to carry on an event for Hajime. I wanted to give a hope to my son. He feels alone.  I wanted to know him in the way he can see; we are all together. That is why I wanted to hold the event.

But it is difficult. It does not work only by my thought.  I have very nice friends. I just had a phone call and worry me. I will think what I can do for Hajime with my friends.

Thank you so much for reading my blog. I’m receiving a lot of encouragement.
That is how I can smile in front of Hajime.
Please support our family.
I believe we can find a best way.

(translated by HM)

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