Wednesday, June 5, 2013

Thirty days

It sounds like the title of a horror film. What do you do when your child says he will die in thirty days? Yesterday my son told his 9 year old sister, my baby, that he would be gone in thirty days and she was so terrified. She waited until she could talk to me alone and she told me that this was supposed to be a secret, that if she told anyone he said he would do it sooner.
One would think that because of how much he loves her he would not want her scared, he would not do this to her. But he is not thinking in a rational way and he believes that he IS helping her by preparing her for what he says is his inevitable death.
He says fear is ignorance. He is doing what he has to do.

Living with this death sentence is the scariest and most horrifying thing imaginable. I'm not sure I could do it if I was faced with a terminal illness and I wonder how to do it now. The only thing I CAN do is keep him with me and make sure his doctors and case managers know what is going on. I have to trust them with his life. Every one is doing all they can to save him but he feels that someone as sick as he is being told he is ( by friends, by doctors) should not be walking the earth.
Growing up with an autistic brother, he managed that stress by coming to believe that someday he could make a perfect world where there were no developmental diseases or mental illnesses. He would create a better place. That thinking always scared me and I always felt it was a symptom of a bigger problem. At the time, his therapist said it was just a teens way if managing stress. However, now HE is faced with his own imperfection and he is judging himself out of existence. I wonder if he feels like he just can't back down from this principle he always stood by. If he set the bar for everyone then he has to be willing to hold himself accountable to the same standards.
I hope there is a break thru in the next couple weeks. I'm trying so hard to make the most of every day. In the end, he will probably at the very least be hospitalized again this summer and everything I had HOPED to do this summer with him will not happen.
Preparing four children for that is impossible. So much is out of my control. I have to trust god with my family and do everything I can to be the best support to them possible.
Thirty days... How does that feel to my son? What do his thoughts and dreams look like? Is he scared? He says he has a calm acceptance now that he knows what will happen. And to me, that is very frightening.
I don't want to imagine life without him. The world without him. I'm going to do all I can for him.
If he only knew how loved he was.

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