The Things You Do For Love

I haven't posted. Jason is off Cellcept. We are waiting for a bed to level

Up and hit Jason with Cytoxin. The hard stuff I really did not want to give him. Everyday the Cellcept in his body dwindles and he becomes a ticking time bomb. So I have not wanted to talk about it much.

This week was another convention. I have to work. Working keeps a roof over our head and medical coverage for Jason. I didn't see Jason much this week. I sent my mom to fill in for me.

Sometimes I look back at how far we have come. From the time I got queasy watching his trach to the days I spent all day with him changing his diaper to come home and change Tristan's.

In my life I never thought given the age gap that I would be changing my older son and younger son's diapers on the same day. But then again stranger things have happened. 

You become calloused and conditioned  after a while. Seasoned. I no longer cringe. Yesterday I and 4 other people wrestled Jason to a bed to do

Ultrasound of his scrotum. I don't cry anymore. I wonder what they think about me when it's all done. How cold this mom is who is able to show no emotion as she restrains her own kid. 

We are looking for a tumor. A benign tumor that if found would be the alpha and Omega of this shit. I never asked for bad news so much in my life.

As they always say, be careful

What you wish for.

Jason has been ok. Not maniacal. We are waiting for a bed.

Then today happened. An aide and a nurse were beat up and Jason was rushed to the hospital. I was with him all day yesterday. Came home to sleep, see my kids and run errands. My intentions

Are always admirable. I wanted to do grocery and get some stuff for Jason. Get play doe for the kids to bring them to Jason to play. When he saw them

Last night he lit up with excitement. I had hoped today would continue. But I pave the road to hell, with cobblestone and mortar every single day.

I sit here with Jason restrained to a bed. Not mad, not upset. It is what it is.  Just me and my converse numb to the bullshit.

I don't have time to eat, think, cry or feel. I just have to do. Walk into the ER and shut his door and cut off the lights. Have the nurse tell me the door "has to stay open" while I correct her that Jason needs to be treated like a TBI patient in a low stimulation environment and to get me the attending.

I come in to assess that all his restraints are not too tight. Look for any bleeding bruises because he still is on blood thinners for the blood clot. I go out and ask the resident if she is aware of his standing meds regimen and is she getting his limb alert for his right arm where he has the blood clot. She looks ate like a deer caught in headlights and scurries away. "Are you a doctor? It in the medical field?" She asked me when she returns. "No I work in marketing I throw over my right shoulder as I fix Jason's limb alert bracelet onto him.

I explain to the attending about our wait for a bed for Cytoxin. I ask her to help expedite the process and give her all the numbers of contact and all of his information.

We have a bed! We finally have a fucking bed to get him the Cytoxin. We are now waiting for transport.

Within an hour the call comes back-Psyche- it wasn't a private room.

Blythedale is apprehensive about taking him back. EDP Jason is hard to handle at full Hulk mode. So I offer to live there this weekend. Live there and stay and keep him in line when the Gamma Rays fuck with his head. I need him safe and in a place I know.

As I write this it hits me that I have reached up to silence the alarm on the monitor that keeps going off since I got here. It's not Las Vegas Slot Machine noise Anymore. I know exactly where it is. I didn't even think twice. That's scary. 

I guess this is the part where I am showing strength? This is the part that everyone says they couldn't do it.

I can't either. Inside somewhere is a person on her knees crying in mental and emotional pain every moment of everyday. The clown face I present to you hides her.

One day she may break through. And I hope that when that happens everyone realizes I played Strong for way too fucking long.