The Lying, The Bitch and The War Drone - A Long Update

Jason's B Cell count was not (2) as previously told to me, but actually 2% for a total of (32). This is why it is important to not just believe what people tell you, but to insist they show you proof of lab work and medication information and whatever the hell else has a direct affect on any sick loved one you have. Jason needs chemo and I have been patient about waiting for a bed. Because of his condition and its irregularity he needs to be admitted into the hospital for chemo, he cannot just have it out patient.


Flu season has hit hard and well nothing is available. There are sick people with influenza ready to claim any bed that opens up and could be for Jason. Last week I was tired. Worked all day feeling run down and I called the hospital, as I usually do several times a day. This time no one answered, and like a deranged ex-girlfriend my mind raced with craziness and I called again and again. Finally, the nurse picked up, "Jason won't stop bleeding we are taking him to the hospital."


Panic washes over you - the way it does cartoons characters. You can feel it from the top of your head to the bottom of your feet. I felt it. I felt the taste of regret like bile in the back of my throat. I wasn't there. I didn't protect him. I felt the uneasiness of panic threaten to take over. That part I keep saying broke a while back acted up again. I can't explain in an articulate fashion what I am talking about, but if you know me and you see me, especially at a time like this, you will catch it. My arm trembled uncontrollably. I know because I needed two hands and about 5 tries to get my car key in the ignition.


I made it to the hospital they told me he would be at, before he made it there. Then I sternly told the resident I wasn't playing school today. Jason had a Tic Tac sized cut on his upper lip. Because he is on blood thinners and thrashed around he looked worse than he was. This hospital visit was a paranoid on call doctors precaution - nothing more. I wasn't upset at anyone. Didn't blame anyone. Not mad. I was tired, just tired. I got him out the hospital within 27 minutes of seeing the doctor and back to his pseudo home for now. Went to work on no sleep, and dealt with the mundane. Hoping all the while just to find a corner to crawl into to rest my body from this life.


2 days later the call came. Jason had a bed and would be transported shortly. I was already at work and had to give my boss the sob story. He hasn't been too happy with me lately, and I feel like I am failing on all accounts every where. The little ones need more time with me. No matter what I do Jason is not back to normal yet, and my job is an amazing gig that I cannot dedicate myself to the way I would love to because I am a matriarch of a family, and I have a lot going on.


I shoot to the hospital and wait for the ambulance. An hour in, when we check on its arrival we are told Dr. Lennihan refused Jason's admittance and wanted his current hospital to tell his specialist AT COLUMBIA to call her. I called around the world to try to find out why. Patient relations. Transfer Unit. etc etc... What happens is you get the - "Oh you know what happened?" people who try to play the "Who told you that?" game. I went from 0-10. Actually I know I stayed on 10 for a bit because a few people came into Jason's room and eventually even his scale crept up some.


"Oh we are still waiting for a bed"
No you are not you called and said he had one. You also said Dr. Lennihan refused to accept him.
"Who told you we called?"
NEVER FUCKING MIND WHO TOLD ME!
"Oh he was refused because we don't do Chemo on the weekends"
ARE YOU FUCKING KIDDING ME WITH YOUR BULLSHIT?!?!?!?!
You know what... I am coming out my face and you are raising my blood pressure - My lawyer will deal with this. You have my son waiting in a bed while his condition is deteriorating over bullshit between doctors? I sware on my son - if something happens to him. If one system deregulates itself because of this slight - I am going to sue this fucking hospital - I am going to BUY the BITCH and then I am going to CLOSE IT!


In retrospect - I was harsh. I know and honestly I regret what I said. It was in anger and frustration and I am just tired of it all. At the same time this is what this hospital does to me. Columbia takes me there - like hard core project chick who has no sense, training or upbringing.  Sadly, when I revert to everything I cannot stand everyone becomes trained poodles ready to jump through hoops and do everything they have already said they would do or we anticipated they would do. Communication lines open, the lying stops, alliances are formed, beds are miraculously found and Drs who once could not pick up the phone to speak to me suddenly call me to make appts to have my son admitted into the hospital. All we needed was a phone call to clarify questions and Jason could have been in and out of the hospital the same day - but no I had to go to war and yell and scream at people who did nothing but go to work today to express the urgency of my predicament and get an answer. I hate when people treat me like that. But there seems to be a trend at Columbia - that class of people are the ones who frequent job postings here realize urgency through tone.


I am hurrying up to wait - for Jason to get his chemo. I hate this disease and I am fucking tired.
I am so tired.

Insurance Mobsters

Jason continues to make progress. He walked the hallways with minimal help and got on his IPad to "shop". While this sounds normal, trust me it isn't. It's an accepted "new way" where he seems almost perfect for 5 minutes of his life to perform these tasks then he mumbles incoherently and his eyes roll in the back of his head and the insidious ANMDARE takes over.

Chemo is on the horizon. Have to hold visits for a while as his immune system is compromised again. I was going to open the doors for visits but-hold on again. Insurance playing the finger pointing game because on a calendar year my birthday comes before the sperm donor's. I prefer the sperm donor's insurance because I was on it once before and know all the tricks, but now that I have a good gig the law dictates that mommy take care of this.

Jason could have had treatment already but bullshit had to be injected between Jason's welfare and the people willing to insure it. 

Everyday I am back at work, committed to keeping him insured and to stay ahead of the medical bills who will not leave me unscathed. Even with the donations and gofundme Jason's medical bills are a real factor in my life. Trying for institutional Medicaid and praying it offers relief-even of just a short time.

This life is crazy. Dealing with work and everyday home life and having a sick child who is a full time job in and of himself. The fact that I manage to stay sane is an Insane concept to me. No meds! No fucking meds! Au Natural I swallow news of setbacks or  fuckups at work or needs of the family. I think others are crazier. The ones who know my situation but don't handle me like I can break at anytime are even crazier than me. 

I guess I am probably not crazy-but just overwhelmed and tired. Crazy people don't self diagnose and know they're crazy.

In Other News...

Jason is practicing how to write again. Progress is still coming! He made me a valentine and every now and then says words.

He still has moments of not being altogether their. I think I mentioned the swing he took at his mama. Funny I needed dark lipstick to cover the mark it left and it's become the talk of everywhere. I was stopped by strangers, nurses, Aids and random people in stores to ask where I got the color from. Velvet Lippie should really hit me off with cash for how much I have been promoting their product.

If folks only knew it's the only color deep enough to cover a black and blue.

I did a trial run: I allowed him his first visitors. 2 of his childhood friends. I told you I sipped the Kool-Aid. I have seen Jason near death so I thought the "improving Jason" was good enough to be seen.

I may have been wrong.

It's hard seeing young men try to be brave. You can still see the little boys in them. These little boys I knew as children now talking to me with James Earl Jones voices and big muscular man bodies saw their friend and I could tell it broke their hearts. When you hear or read about it and then see it; it is quite a different animal altogether. Their eyes were glassy their noses red, and I realized as I hugged them and reassured them that this was temporary and Jason was going to be ok that for the first time in a long time my eyes and nose weren't.

I think that strength kind of grows back. Because I feel like I have a little now that this disease has gotten me angry. After feeling helpless and needy to this disease, now after so many battles with it over Jason I have the strength to tell it to fuck off.

Things won't be the same. Well, I am getting back my Jason- THAT will be the same. But the scars on his body may never go away, like the scars I have in my heart. And in my head. ANMDARE has gained a lifelong at he enemy...

And I hold grudges.

Best Valentines Day Ever

Jason wrote me this.

Just When You Think It Is Over

"That, that don't kill me, can only make me stronger." - Kanye West/Stronger

I expected it. I tried not to. I did not want to manifest it into being, but deep down I knew. The disease wanted to play hide and go seek with me, and well I found it. He was tested. He tested positive. By a small number, but a number other than the big fat ZERO I was looking for. The ZERO he left Columbia with.

I am not breaking down over it. I am stronger now. I am not going to "woe is Jason". Did too much of that shit. I am lacing up my boots and going in. Head first, fuck the bullshit. He had to be tested. I needed to know. I needed to make sure he needed it before he got more chemo. We will deal with it. We have no choice in the matter. This Maldita disease is going to get sent back to hell where it belongs and I think I am ready to lead the charge right now.

I got this.

Laughter IS The Best Medicine

I don't have that mom that offers to watch my kids. I don't have a dad I can go to for money. I don't have that close network of family members who bind together and create a unified front in times of tragedy. I have a few.

Don't get me wrong - I have a few amazing cousins and aunts who go above and beyond the call of family. But to fill in the cracks and fault lines where crucial family members are missing in between- I have been blessed ten fold with friends. These amazing fucking friends who I don't talk to nearly as much as I like. Or get to visit nearly as much as I should. But we love each other to the point that they know energy. They realize through absence and contact that something is not right with me and they hear the call for help and pick up the baton and handle it. My friends Kevin and Maribel put together a benefit for Jason. Something to create a buffer between his medical bills and me. This is hard and in more ways than you can be told. It takes a toll on everything and tries to drown you. But my friends won't let me drown. They banded together with my friend Yesy, who bought in Richie, and all of a sudden there was a comedy show with elegance and delicious food and beautiful center pieces and raffle baskets.

For the first time in almost 4 months I laughed. Not a polite chuckle or snicker to conform to the group at work or in public. But actual laughter. The sound foreign to my own ears. When I looked to my left Carmelo was laughing too and it felt so good to feel normal for a minute.  This disease makes you sub-human. It makes you animalistic. You live a life where you have this dirty secret you don't tell anymore because people are tired of hearing about it. If you keep giving bad news people lose hope so you only tell the good and you hide your fears because no one can be sad this long.

200 people showed up to the benefit and that was an amazing site to behold.  200 people woke up in Antarctica with me Friday morning when the snow decided to flex and I thought I would be there alone. 200 people cared enough and bought awareness to this POS disease who I am going to continue to fight against until it's done. Well after Jason is better I will be in this. I don't want anyone else to go through this. This time was enough. 

Thank you God for blessing me with amazing people. Thank you God for allowing me in my quests to find amazing family.

Thank you.

Confidence in Survival

ANMDARE survivor the beautiful Jocelyn. My muse. My inspiration. My assurance that Jason will one day be as amazing as she is. 

The Unbelievable Tales Of Life These Days

 Jason clocked me good last night. In my life I never thought I Would be saying that to anyone.

I was putting on his protective gloves for his safety and that of his aide and he got in one good shot. His brain is on very basic human mode. Fight or flight. I think you can guess which mode he is in more often.

I have asked people to buy black in preparation for his funeral for far lesser offenses. But today, in this lifetime I am telling you straight faced that my son, who is hospitalized with an Enflamed brain, cracked his mom in the mouth yesterday and gave me an Angelina Jolie pout and I did not retaliate or kill him on the spot. You expect stories like that from Lilly white suburban moms who go on TV with out of control kids. (Remember that kid on Dr Phil who slapped his mom? I am still looking for him to beat his ass for that chick!) Not Puerto Rican moms who were raised in the hood and would back smack her child over teeth sucking. I have not gone soft. I have a son who has obviously lost his mind due to illness.

I half joke that one day, far from now, when life has returned to normal I am going to walk into his room while he sleeps and give him an old school beat down for all the shit I have gone through. 

Like I said... I half joke...

Oh Ye of Little Faith

"Hey!"

"Hey!" 

"Stop it!"

Once upon a time his first words were "mama" and "bobo".

For Jason's rebirth they were the above. He has moments. Moments where he comes through. His voice is what startled me the most. To hear the spontaneity of his voice. His eyes looked at me full of life and deliberate. He was there saying the words. It wasn't the ANMDARE! Sometimes he seems to come thru crystal Clear for a minute or two. Then like Whoopi Goldberg in Ghost would say, "he's gone."  

No longer there. No longer present. I wait patiently for him to return. The fact that he comes more often and each time for a longer period is the miracle. There are so many things that could have stopped him from getting this far. The Bradycardia. The low blood pressure. My resilient son is showing us how strong he is. How determined he is to come back. 

For those that offered me your premature condolences...you can have them back.

Those who diagnosed my son to a sub human status thinking he will never make it through, thankfully you are not his doctor.

He is not whole yet, but I know he will be. 

You need to all have a little more faith.