Thank you for posting your story, you are speaking from my heart! I feel with you. I am so sorry for your loss!
I always felt that our son Henry suffered, even though he was sedated most of the time. He also pulled on his breathing tubes and other life supporting cables. He made the decision to leave us, so his suffering ended after only one week. But we were with him when he went.
I am still unable to write down my whole story. It's too hard.