Slipping In The Side Eye

It's working. I want to run through the streets screaming at the top of my lungs until my bronchial tubes are bursting like fire crackers one by one!

It's WORKING!!!!!!!

Jason has remained Bruce Banner. And every day for a little bit longer he is becoming a Bruce Banner that is recognizable. Everyday he is doing something, sometimes just very slightly, but nonetheless obviously Jason.

He's not ready to call you and tell you what he remembers. He isn't ready to leave the hospital. His texts and coherency levels and capability are still hit and miss. We are still Far from that but if you see where he IS from where he has been-you get it. You understand and you will want to run with me. 

They advised me to hit him with the hard stuff and I didn't! They tried to scare the shit out of me! But I stood my ground. The best recommendations was not to use the treatment he is on now because "it wouldn't work" and I pushed for it anyway!

I don't know shit about medicine. I know my son and I know when I think I have good chances. Thank you God for guiding me. Thank you God for proving me right!!!!

Months ago I was so afraid to make these decisions regarding medications. Who the hell Knows what big Pharma has in this stuff. All the Product information on these meds are pages long and in small print. They can drive you crazy. They drove me. I went on recommendations. Instinct and body language of those advising me.

Medicine is a practice not an absolute. 

When things don't make sense- I have declined. When the doctors don't know how to answer me- I pushback. The decisions on my son's care are subject to acceptance and approval. I vetoed several and I cringed at some I have allowed.

This one decision, so far, has been a good one. I want it to continue that way.

The Search

You are in this for so long that it is easy to forget. You forget that the story is not known to everyone. Prince dying spread like wildfire! Donald Trump farts and it  hits every social media outfit. But Jason? Jason is nobody the word thinks of. Just me and a select few. While that may be the case, (for now), Is it really too much to ask that for any place I take Jason to they at least take a vested interest in his story? Sometimes it is. And my Asian looking self becomes Tiger Mom, having a "Come to Jesus" talk with everyone regarding Jason, his care and the whys and wherefores of how we do what we do.

It's done. Page turned and we are all ready. Now we are beginning the search. Scheduling Jason for MRI's and scans and tests and things to see if we can find a divot, a lump- something that could be the Alpha and The Omega of this disease and we can schedule it to be evicted out of him. If this disease is caused by a tumor (typically benign and in the chest cavity or testicular area) we would be fucking Golden! Remove that bitch and my boy would be back on wake up! If we don't, we have at least another 6 months until next scan. I have never wished for bad news more in my life. I can only hope and pray that one of these tests show positive and we find what we are looking for. I don't know if I would survive the news because the breakdown simmers so close to the surface sometimes. But I know he would and that is all that matters. Please give us the chance to find what we are looking for.

Perceptions of Children

Sammi asked me, "Mommy why are you sad?" I didn't know what she was talking about. I was there sitting on the couch feeling fine. I was watching her and Tristan play when she turned to me and said that. "What are you talking about?" I said maybe a little too on the defensive. "Your face mommy. It was like this"-she showed a frown-"like that mommy." I still had no idea what she was talking about I felt fine. "How about now?" I gave her a ridiculously cheesy grin and tickled her. She squealed and ran to get Tristan to join in. Later that night she took my phone and snapped this picture. Knowing full if she had said it again without proof I probably would not have believed her again. "You see mommy, you look sad."

Apparently, I do.

A Sea Of Calm

I think you should keep that no news is good news. It is hard to post when he is "okay" because the minute I press publish its like the words rattle the cage and it begins again. The village is set on fire, the villagers are running around screaming. Begging someone to do something and I "The Lord Commander" of it all sitting there shaking my damn head because I am running out of options on what to do.

Mike Tyson has not punched anyone out in a few weeks.

Families have not been upset that a screaming madman has walked the halls.

Some medications are being lowered and every now and then he texts me "I love you".

When I was a kid I went through this type of mental abuse. Loving people who could only hurt you and profess their love again when you are in pain. I broke every tether and tie to those people. Essentially cutting off every toxic family member I had until there were none left to speak of. I thought I was safe from making excuses for someone I love because I love them or I believe they don't know any better.

Then came this illness. And the person with the power to hurt me the most in this world was used as a puppet to do exactly that. This Maldita illness that So many times I have been strong enough to not let hurt me. But at certain time of the month and at certain points of life this disease has manage to take its clawed hand and grab me by my jugular vein. Wrapping a whole hand around it tight before beginning to pull.

I can feel the tension. The want for it to pop and break and make me lose everything I am and everything I have as the blood, sense and mental stability floods out of me. 

That's what this feels like. It feels that crazy and it feels THAT bad at times. You wonder how does someone survive this? As you get up every day like a drone and dress and function and do it again and again.

Then you realize there really is no method, or regimen, or way to do these things. 

You just do it.

This blog is mainly about and for Jason. But his story is not the only one hurt or defined here. There are many others. This is about what this insidious disease does to a family. To friends and family. brothers and sisters. Grandparents. A stepfather. A mom. While Jason alone is left to battle this disease. His family has to keep up with life. The kids are in school. Mom and dad have to work. Life just tredges on. Friday I got a call from Samantha's School: she had lice. I dread telling my boss: another sob story to ask for time off. I dread getting her and dealing with it. I sat down for a minute and closed my eyes and I prayed. I prayed real real hard because I have lost my shit so many times I really don't have much more to lose. I prayed because no matter how fragile I am and as easily upset I can get I didn't want to do it at work. I didn't want so many people to see. My nerves boil aa fraction from my surface and it's a fine line to keep them at a summer. I prayed to anybody, anything that would listen to me and give me what I needed.i forced in the calm and I packed up and took her to a magical place that removes lice for you. I paid a sum of money I did not readily have and went home to clean. I checked on Jason and I prayed real hard again. Jason was good all weekend.no outburst, no crazy. I had an immediate situation to deal with and God watched him for me the whole weekend. That was the answer to my prayer. I ask you all to pray on my behalf that it continues.

So How Is He?

The infamous question. The one more people ask me, and even more people are afraid to ask. Right now? Jason is alive. Thankfully better than he was last month or the Month before that. But no where near where he should be. He has gained weight. Even has a slight pouch in his gut.  No longer is he looking like a Holocaust victim. His hair is a little longish because now he protests when I try to shave his head. He needs a haircut and a shave but even in his drug induced stupor won't allow me to do it because "you always fuck it up!" He said to me the last time I tried. I laughed hard at that declaration. The little prick who picks his nose and farts so lethal you have to leave the room is worried about how his hair is being blended in.

I shut off his phone for 90 days because it's difficult for him to communicate. He tries desperately to reach out to his friends but I know it's painful for them. I know it is. He gets so excited at them texting him back or talking to him that he loses his thoughts. His communication comes out jumbled and incoherent until he is too frustrated to continue. 

The best I can give you is that he is coming along. Steadily. And in the end he will win. I am not bullshittingn about that. I won't give u a completely different altered Jason and try to sell him to you as the real thing. In the end when this is over we will have the real Jason. I will just need a lot of help filling him in on all the time he has missed. 

Please continue to pray4JAson

The Words Get In The Way

In my head, lyrics narrate my speech. Everytime I begin a post, Big Pun is in my head taking a trademark deep breath and beginning every post with,"It's so haaaard."

It is. To live every day. I am trying. I am trying so hard to look at the good and not the horrific. To be grateful that my son is still here and although it will take time he will comeback. He will be my son again. No matter how much time has to pass, one day it will happen.

That's the same line I was told as a child. Growing up Jehovah's Witness and being told the "last days" are coming and "the last seconds". There is but so long you can live with baited breath before the disappointment becomes the norm. Yesterday was Mother's Day. And the first baby to ever call me mom was sick in a hospital. Heavily sedated for his own good. 

Life goes on while he slowly realigns reality. His brother and sister are getting older. Time is lost and broken and you blink and it's near 7 months now. 7 months of sickness. 7 months of insurance and bills and being dragged by life because it keeps moving without you.

At my weakest points I have asked. What did I do to deserve this? Why my Jason? I don't want to hear the shit about the strongest warriors and "the test" and all of that. I want an answer. An explanation. A "why" and "where for" that I can swallow and makes sense.

But it will never come. That is the ramblings of the weak. Life is not so neat and simple. It's vague. And it's tainted and in the end we all get our serving and whether you like it or not you take it and you move along.

God owes none of us an explanation. And I am no one to demand one. When I am weak and I ask why my Jason. I know the answer already. I am just being stubborn. My child is no different from yours or anyone else's.

He is a child who is loved and wanted and cherished. 

When I selfishly give in and ask why the answer is piercing and jagged.

Why not?

Happy Mother's Day

I am sitting in the terminal waiting to go home. A week long business trip keeping me from my (3) babies all week. I miss them. I miss us. I miss last year this time. When they were all healthy and happy and driving me crazy.

I sat here thumbing through Facebook. Smirking at the cute and funny and smiling at the profiles of so many who changed it to show how much they love their mom. For a minute I dipped into it. That deep well of sorrow and despair that  lives inside me. I felt a drop fall that reminded me that my boy is still blinded by encephalitis and we still have a way to go to be 100%. He won't know it is Mother's Day. There will be no mention from him in coherency. I will have to be careful how I hug him, less he will push me away. I have to pretend it doesn't bother me and move on. I miss him so much. I am with him everyday and I miss him. I miss his smart mouth and his quick wit and his stubbornness.

I mentally pulled up my big girl panties. Wiping away the snot that threatens to fall from my nose with the back of my sleeve. Trying to pretend my nostrils don't burn from crying. I can't do this. I can't go there. Not yet and I am unsure of when it will be okay to do so. too much goes on, too much is at stake. I have too much to do. I can't think about the parts of this Odyssey that hurt today. I have to focus on what is at hand. There are people who visit their kids grave. I am lucky enough to have mine still in a hospital with the promise to be 100% one day.

I just have to keep being patient. Even though sometimes I don't want to.

Realigning Reality

Sometimes you need to step away. No matter how crazy that sounds and to whom. You need to step away and come back. Because when you are in it for too long the misery leaks into your soul a little. It robs you of who you are. Then this disease takes even more from you. It takes your love one for a time, and then it also takes YOU.

I know you are reading this like, WTF?!?! This chick is sipping the Kool-Aid. But I am not. I am being honest because that is what I have to do here. I have to tell the truth even when it's raw because there are other people, other families this will happen to and their lives will have no filters and no editing and no candy coated shell. They will need a guide to the raw parts of all of this and they will need this.

My boss sent me on a busines trip to California. My first thought was to be upset over it. To resent the fact that someone would mandate I go somewhere knowing I have a sick child and responsibility and THiNGs. Then I got here. Engrossed in work. Catching up on things getting to learn others better. Panicked and stressed and thinking about Jason everyday. Calling more than usual. Worried. He is ok. I put a team in place to help me. 

Eventually I slept. I'm talking to his doctors and thinking more clearly. I am thinking of alternatives and next steps. For Jason. For the first time in a long time, although my heart is very heavy: I have a very clear mind. Sometimes we have to do things we hate strictly on the premise they are good for us.