The Calls/Texts/Emails/Facebook Messages

I want and need help. But there is something you must understand. I can't even think of myself. I sit aside this monstrous bed, watching the worst video game in the fucking world. With colorful lines and dips and lulls. I watch my son's heart race for no reason and skip beats.
His oxygen saturation dance around 100 with relief then watch it dip into the lower 90's when I begin to forget to breathe myself.
I beg nurses to check him.
Argue with doctors over how long we will wait to give him medication because he is doing things that seem like he is in pain.
I don't drink or eat - because I forget.
I have forgotten so much I have lost weight and my hair is falling out.
But still my phone rings and the questions start:
"Why didn't you call me?" from people I barely know or are not a part of my everyday.
"Why didn't you tell me?" from people who barely know him or me but heard the story.
"What is going on? What happened?" From people who call him JUSTIN.


I stare incredulously. Who in their RIGHT MIND thinks about someone while their first born child is battling a rare illness just recently discovered? Please explain to me WHY THE FUCK I would stop caring for Jason to take 5 minutes to tell a bunch of people who were not thinking about him before this happened the run down directly from me on how his day to day is????


And that's the part that kills me. I went to Facebook. I went to family and friends and they know and they share info but there is still that bunch that heard the story but still want the play by play directly from me.


I have so much going on that if you really cared you would spare me. My phone wont take voicemail anymore. I don't listen to them anyway. This is not about YOU. It is about HIM. This blog was created to better communicate. I know that a lot of prayer warriors want updates and I want to give it to you. I want people to know how he is to fine tune your prayers to relevant information. And for those that genuinely care - know I am doing the best I an to inform you. This is not easy. It is the hardest thing I have had to do in my life.


Also, because again: I pray not but one day - someone somewhere will find it useful. They will need this. They will want it - and it will help.


Those looking for entertainment value or just to be nosey should go find another place to congregate.
This is not it.