A World Of Prayer

I was raised to believe that worshipping statues and honoring symbols were acts of satanism. Jehovah Witnesses denounce he Catholic Church for it, but I think they don't understand.

I think for some people statues and symbols bring something tangible to help them form the bond of intimacy. Like going to church. Church is a symbolic place- is it not? Why should I have to get dressed in a certain fashion and go to this one place to show how much I want to praise God of God is everywhere? I was an inquisitive child who got scolded a lot because of my mouth.

The point is, sometimes these symbols are just the megaphone for the feeling now. I read somewhere that the streets call it "vibes" church calls it "spirits"- it's a feeling of conscious that takes over that leads you to believe that someone or something is listening or taking control. This is what going to Christ in Brazil must be like. That extra you need to let ti know God is listening. I think he is.

 

Once upon a time...

At 2:20 in the morning on a cold November night...Jason's lungs collapsed. He was taken to ICU and a doctor told me, he wouldn't lie to me... He could die. I remember up to his rush to ICU and then the rest of the night is fragmented. Mosaic pieces trying to be kept together in my psyche because I was already cracked by this point but with that news something else ripped.

I could never imagine a better day at that moment. The thought of something happening to him broke me. I begged God not to let him go. I begged endlessly... I had to have faith that a better day would come and an army of people prayed for me because I needed them to.

7 months later on my bday... I got a better day...

 

No where near where he was. But definitely on the road to getting there.

Chemo

No Bueno.

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.

Today

I don't want to talk about yesterday or he day before or anything this week for this matter. I want to talk about right now. Right now and just Today.

Jason was Okay today. He had a good day and I am praying loudly that it continues.

Please God. Please just help us let it continue.

I Need A Minute

You try real hard not to break down. You have to. To breakdown in a crowded place with a ton of people is to put on a show and I am not about that life. I bury my pain and I promise to let it out later and so far later had not come yet.

I don't have Dr Hoenig to look away as he talks to me anymore. I don't have that reassuring person who tells me he will be 100% anymore. I cling to the words of Dr Hoenig because that is all I have even though he is not in the picture.

I asked because no one has talked about it in a while. I had to ask because - well I had to. 

"Are there any long term effects I should be aware of? Even the girl

Who wrote the book is not 100% as she claims. Everyone who knew her before thinks she is a little more impulsive, more ADHD."

She paused for a long time before she began...

"Well, the recent findings are that patience sometimes exhibit early signs of dementia..."

I stopped breathing again. I know I did because the spots came and then I had to breathe fast and hard. 

"We don't know, to tell you the truth. We just don't know. There are so many variables in those other patients that showed the signs of Dementia..."

"So after all this... I might never get him back?"

"It's just so hard to say Irene."

So It Is Written

Maybe I should have been a director? Cinematography should have been my thing. I'm on the phone with the doctor and I close my eyes. The words drowning out in echoes behind me. "It's your choice. I cannot guarantee anything, but our chances are very good that this could end it, finally."

I'm walking through a long dark corridor and the voice echoes behind me. There's Jason's voice screaming his rants "I got to go to class!!!" 

Dr Hoenig: "1-2 years recovery."

Dr. Selman: "you have a very difficult decisions to make."

 I look around and see no one but I hear everybody.

I stop at the end of the hall and enter a dark room. The monster from Insidous is in there. I know he is. I can feel him. I walk to an alter dimly lit by candles in various shapes and sizes. The voices continue and more join in. Laughter and screams mix in. 

I know what has to be done and I am trying not to break down as I do it. I take the dirty tarnished knife sitting next to a long scroll with words written in a language I don't understand. Words that are binding and forever and no matter what I do now I will never take back.

I cut my wrist and watch the syrupy red stuff ooze out of my vein. It's dark and rich and symbolic of the blood I will lose now. There will be no children for Jason. 

With my other hand I dip my finger into the fountain at my wrist and press it to the parchment. Slowly, methodically and deliberately writing each letter.

I just signed the deal in time to wake up in reality to answer the doctor's question:

"So do you want to give him the Cytocin or not?" Dr Vargas asked me.

For the first time in a long time. I was able to say it with conviction:

"Yes. Give it to him."

I Love You

"It's the way I feel, I feel - oh this is the way I live..."

-Big Tymers

I was on line at Starbucks. Listening to the guy in front of me tell his female colleague all the things he has to do in Photoshop. Watching the girl behind me out of the corner of my eye because she kept trying to blur the part in the line between her and I in an effort to skip. The Brooklyn in me was on a leash pulling forward getting ready to bark.

Then the phone rang. It was Jason.

His speech is slow because of the meds. But I can usually understand him. Whenever I see his name I light up. 

My heart skips when he calls me. Then it pounds in my chest. I usually dominate the conversation because I have a lot of questions. 

"hi Papi! It's mommy! I love you! How was your day today?"

"Good. I love you."

The words stung me. My eyes burned and so did the air as it hit the back of my nose. 

I am in a crowded place and I want to suddenly breakdown and cry like someone hit me. Every curse/every punch/every disgusting moment of the last 7 months this disease had projected out of him was washed away with 3 words.

I had not heard those words from him that clear and that sincere in so long. And he said them.

And he said them again. And again. And each time I looked around nervous. Trying to hold back the cracks in the facade of my face as I stood around regular people in public who have no idea of the nightmare I live.

I closed my eyes and tried to swallow back the knot in my throat. Everyone was still talking about their lives and their business and their Starbucks orders and there I am: crying over 3 little words said to me by my son. A son I almost lost 3 times in the last 8 months. A son I would lay my life down for.

My beautiful encephalitis riddled son who is going to be hit with Hiroshima Bomb Grade Chemo soon.

Bending The Knee

I tried. Jason I sware to you I tried with all of my heart. This disease is a son of a bitch and I can't allow it to take you. I tried Jason. I fought with the doctors and got you meds they didn't want to even try. But Jason, this disease has proven too powerful. You are hallucinating again and badly. I can only imagine what you feel like right now. I can only imagine how afraid you are. I have to do this Jason. If it means that I will never hold the beautiful grandchildren you could have given me,then with a heavy heart I must relent. I am so sorry Jason. I am so sorry that this will be the casualty for what will happen to you. I love you more than you will ever in your lifetime know. The suffering and pain I feel over this robs me of sleep and the ability to eat. I can't think of anything but my guilt over this. But Jason I tried. I promise you I did. Please when this is all Over and we rebuild your life and you are able to understand all of this- Please know every decision I ever made was with full knowledge of all information available at the time, as analytical as I could possibly be and with every intention of saving your life and bringing you back to yourself. You are more important to me than anything my son. I love you. I pray that this nightmare is finally coming to an end.  It has to, it is too painful.