No Estas Sola

The Gofundme got a donation. The title of this post was the note attached.

After I read it I cried like someone beat me.

That's exactly how I feel.

All a-fucking-lone 

Imagine Living With No Constants

Imagine a life where every moment you have no security? Nothing is certain. Nothing is secure. What you need to hold onto and believe is always in flux and no matter what you have to remain fluid with it. The anxiety and frustration of never having a constant puts wear and tear on you. On everything you believe. On everything you know. It puts wear and tear on your life. Bosses are calloused to your sob story because it has gone on for so long. You are embarassed to tell your story because it never ends. It's if your every day life now and for how long will it go on? Even the good news has string with metal cans trailing behind it to usher in the bad. Everything was good. Everything was fucking good.

I am in with the doctors. We talk everyday. I am in on the pow wows and I have to be involved in all the bullshit. I talk them through their theories and push and pull on their recommendations. I have no medical training. I ask God to be my advisor and good ole common sense to be my back up. But the answer is not always black and white. Sometimes things are grey and we may need to investigate more.

Now Jason might be having seizures.

Relatable

The people I work with complain about how windy things were a few nights ago. Items flying around balconies and wind blowing thru doorframes 

Tell Them That It's Human Neysha

The fatigue creeps up. It comes on as a yawn, and then red eyes and when you bypass the usual suspects of symptoms your body plays "closing time" in your head. But even with the Oscar music telling you to hurry up if you push through for days on end like I did your body kicks it up a notch. From March 23rd I had not slept again until March 27. How? I don't know. I managed a complete body shutdown on March 27th and got up to function like normal, go to work and watch Jason all night on the 28th. There is something about this situation. The urgency has caused me to forgo food for days to the point where I am 120lbs down and still dropping. Sometimes after not eating for a long time my body is too sensitive to eat. I need fluid and simple foods my body doesn't need to digest too much. Otherwise my stomach grumbles like "wtf?!" And send everything out projectile style. Now I can forgo sleep. Maybe I will be able to move objects with my mind or something soon. Maybe it's like a Buddhist Chakra or something. Who knows.

Jason is back in rehab. Better. The news is, like a lot of this, fucked up. Because we acted on the wrong information. Now in this case it worked out for the best. This fuck up turned out to be a great thing! But it just haunts me about maybe if I acted and it went wrong??

First, they said he had a relapse. With the blood test saying the disease somehow ambushed us in the last 3 weeks and made some serious advances on him causing him such violent outbursts. We, as in with my permission the medical team, went in like Pablo Escobar. Flooding Jason's veins with IVIG and Chemo over (3) days. Playing offense and looking to nuke any hint of disease.

Turns out the test was wrong.  

Jason's spinal fluid showed the disease is at 20 down from 649 that presented on initial diagnosis. We are winning. And I am glad we went ham on the 20

That are left. They are going to learn today!

Jason's behavior is unfortunately just part of emerging. As his mind clears of inflammation and the disease it will lessen and he will reflect more of his own personality again until he is back.

Now we have to sit and wait. Next week douse him with more chemo and sit and wait again.

Just hurry up and fucking wait.

Now it doesn't seem so bad. Last night I went home to shower and sleep for the first time in almost a week. As I washed my thinner body I felt like a soldier coming home from the reserves. I come home to visit because every few days I am called to war for Jason. Whether it is insurance or doctors or treatment plans, there is always something. I am tired. Exhausted. fatigued. No matter how many calls for being strong and how many compliments about how I do what I do the reality is the same. 

I am human. I need a break.

It's Only A Day Away

Jason is staying an extra day. No slight on insurance's part. More because of last nights episode. Unfortunately, the team who was "helping" didn't help. There are lots of details to add in that but I don't have the energy. I don't have anything. I can't breathe. I am going to stay with him myself tonight because you know who I trust with Jason???

Me! That's who.

I am the only person on Earth that can do shit right when it comes to Jason.

The only fucking one.

Don't Sweat The Small Stuff

Jason is on his 3rd round of Chemo after finishing his 7th IVIG. His new Dr is aggressive- we like that. Aggressive is being Pablo Escobar about this disease. This is who I need in my life. No more hippie bullshit. Happy Easter to you all. Hug and kiss your healthy children for me and please #pray4Jason

Moments In Being Tired 101

I don't know if it is that I am tired or that I am spoiled: just pumped 3 turns of soap into my hand at the bathroom sink, waited a full minute waving my hand and staring at the sink handle trying to will the muthafucka to turn the water on because I clearly see no wireless sensor. Then I annoyed turn the handle myself upset that I had to do so.

I think I need a slap.

Or sleep...

Beggars Better Dare Not Be Choosers

I asked for help on Easter. I know. How dare I. After not sleeping for 4 nights and 5 days I pick the holiest day on earth to ask for someone to sit with Jason. I got someone to accept and I pleaded my case. My mom was to come at 3pm giving me some hours of day light to burn for much needed errands and enough time to do some work due today AT WORK. 3 turned to 4, 4PM turned into 5PM and next thing I know my relief shows at 8PM. I can't get mad. I can't be upset. I get the guilt tripped, "I couldn't get anything to eat because I ran over here" speech. If I roll my eyes any harder they are going to tear out of the sockets and I am going to go blind. I have to grin and bear it because now their is no time to pick up groceries, no time to get the kids some items for school. I'm so tired that although I have reports due for work I can't keep my eyes open enough to think straight. I'm hallucinating with delirium. The aides have each made notes to the nurse. I have stayed up every single night with Jason and I stay up every moment of the day. The social worker came to speak to me. "The nurses are concerned. They have documented that you have been awake for over 72 hrs now."

I made 72 hrs 2 days ago.

I go home and I crash at 10PM and it felt like I blinked and Carmelo was shaking me awake at 5:55AM to ask me questions. 

I immediately call my mom. At 2AM Jason had a huge bout of agitation That causes me agitation. They were forcing him to lay down when he wanted to sit up. Not allowing him to be comfortable. TBI patient rule #1 dont engage -broken. The DR gave him (3) PRN's and he is still not sedated enough to sleep.

With this news I have to shower get my kids ready and go to work.

Tristan misses his bus because I had no one to put him on it. Samantha is late because a woman in a smart car didn't think she had enough space to pass a van in a 2 lane street she stops. I Sam stopping - We get rear ended.

Everyone is okay-I am chronicling the headache of it all. I hoped to get in with enough time to work on some things before Monday morning began. But the L train has other plans.

I pray everyday for my son's life and the betterment of his well being.

Aside from the hell I go thru with him my every day life wants to bitch and moan and test my patience even further.

I am exhausted. Please don't tell me to pray harder or be strong. You do that. I'm fucking tired.

The Showcase Showdown

Happy Easter 2016. My early morning wake up was Maria-floor Administrator. Jason being "restrained" is a no-no. I restrained him yesterday, I don't cry anymore when I do it. He pulled at his Gtube and yanked out his IV twice and I had not slept in 3 days.

She was a charming woman, older, a definite stubborn streak, but she was reasonable. Like the nightgown in ER- Jason's restraints are breaking "protocol".

I don't know if it is sleep deprivation or I am working in marketing too long but I hate that word.

I explained my precarious situation. She lamented. No screaming. No cursing. A kindler gentler more direct Mom. I'm making progress. I have to.

If I go ape shit on this bullshit one more and again I'm going to bust a vein somewhere.

Woo-sah. 

Thank you God for sending me the right people. Thank you God for giving me a team player. Thank you all for the prayers.

Thank you God for the patience. Where I am drawing it from can only be your Grace.

Amen.

Blood Test Say What?

Jason had a relapse. With all the great strides he has made this insidious disease found a way to infiltrate his brain again. Maniacal behavior is explained. Treatment plan remains the same. Take your position we are on offense.

72 Hours Sans Sleep

I don't remember the last time I slept. There have been a series of long blinks but my legs feel like noodles and under my eyes look like someone smudged black ink. We spent 2 days in the ER. ER is short term, never handling someone who comes in with standing meds etc, typically those people are moved quickly. Unfortunately Jason missed meds and meals and so did I. My blood pressure is high. I know because my headache does not go away and my ears feel full of pressure. Hopefully it will go away soon. Being tagged out finally. My mom and Jason's Grandmother are coming to sit with him. Have to go home and try to live real life. My boss has asked for somethings so I have to make that man happy. My kids need their momma and bills have to be paid. I won't lie I was a little delirious at some point last night. The line between real and fantasy kind of blurred. I was not sure if I was married and had other children, and I even questioned what day it was. I need coffee. I need sleep. Jason needs his 2nd round of IVIG today, the first of two flooding his system last night and in a few hours we are going to douse him again. This disease burned all its chances to leave peacefully- now I want IT DeAd, It's Mother Dead, It's Father Dead, It's Cousins Dead....

Be The Coffee Bean

Dr Robinson one of my favorite doctors attended Jason in ER. He is working with Dr. Wendy Vargas a Nuero-immunologist who has taken Jason on. She is giving him more treatment for the disease in an effort to send it to hell and keep it there. Aside from his fashion faux pas and the issue of not having his meds on time things are ok. I am patient. I am kind. I offer help even if I repeat myself every shift to different nurses who have no knowledge of what the one before her took notes in my face about. But I am here for help, and so I offer as much as I can.

Assisted in my 2nd lumbar puncture on Jason. It's sick to see water come out of someone's back instead of blood but hey, he needs it, I swallow back bile, it is all good.

There is a story, much like my waxing nightmare, that has circulated the Internet. If it is stolen like mine was I feel for the amazing author that wrote and would gladly give you author props if I knew who you were. Apparently it begins with a girl telling her grandmother how she was cheated on. Grandma proceeds to place carrots, eggs and coffee in water to present a tangible metaphor. After boiling the carrots weaken, and are forever changed. The water hardens the eggs breaking away their most delicate exterior and altering everything it had inside. Then there was coffee.

The coffee bean told the water "fuck you!" And was the only object that changed the water. It grew stronger the more the water tried to change it. While I admit I was once an egg at the beginning of this disease, I needed to be an egg to be strong enough to become coffee.

Anti-NMDA Receptor Encephalitis Jason and I are coffee beans. Say hello to Bustelo you Maldita disease and:

Fuck You!

The Hell I Go Thru

Emergency room purgatory is where we are. Exiled from Rehab until we have a better treatment plan, one that can control Hulk Jason, not just Bruce Banner Jason, we are locked in a small room with barely the wifi signal necessary for me to work. I'm struggling, to care for Jason alone because it is so busy here I have seen the nurse once a shift. This place is heartbreaking to hear the babies cry and see the miserable children. This place is backbreaking as I struggle to change Jason's urine soaked sheets and clothes by myself talk him out of not getting off the bed or going back to sleep. I have a "waiting room" chair. The kind that is uncomfortable and should not be sat in for more than 15 minutes, yet we have almost reached the 14 hr mark. Jason has been sleeping, deep, much needed sleep. In comes security, he is the doppelgänger for Carl Winslow in Family Matters. He looks at Jason, asleep, in wrist restraints and wearing the clean T-Shirt and Sweatpants I struggled to get on him , "He needs to be changed into a hospital gown."

I am tired, I apparently answer too nicely, "Listen, he has not gotten his meds and can be very combative, let's just leave him-"

He cuts me off-

"Hospital Protocol is he needs to be in a gown. He has to be changed."

My Sgt Murtaugh moment: I am too tired for this shit.

"Okay, then I want to speak to your supervisor. I am not going to wake up a resting TBI patient because he is not in the latest hospital fashion. I am going to upset him and force him to be sedated because you don't like how he is dressed? He has on a cotton tee and cotton pants, nothing that can injure him or you and in an emergency we can cut the clothes off of him. Rules were made to be broken."

The nurse called the supervisor, apparently my previous reputation has preceded me, Jason was allowed to be Kanye West up in this joint and wear his own fashions. 

I sat back in my chair, my neck catching pains in either side, my extra padding gone so the bones sitting too long bother. I sleep in 20 minute intervals and every time I wake up I pray and ask God to help me. The nurse knocks and opens the glass door letting in all the noise, before I can turn to say something she slides in a recliner and takes my hard ass chair. I could cry, you have no idea how life changing this is.

Wish You Were Beer

Devastation doesn't feel the same when you prepare for it. Mentally I am not hysterical like I thought I would be. I am worse. I am numb.

Jason is being moved to a regular hospital because he is just too much to handle. The doctor is fed up and so are the nurses. They can't control crazy, and that is the main objective here. Control, subdue and cure.

The aggressive behavior can stem from any number of things. He needs testing to secure what it is and effectively treat it. It's the disease. But we have to determine if it's because the disease is on its way out or on its way back up.

I had to tell my boss. The one who has done so much for me already. This amazing boss who put up with me being MIA for nearly 3 months that I need to go back into the trenches. I have such opportunity at my job, but for the 2nd time in my life I am forced to choose between personal and business.

God I need help. As a matter of fact please don't help me with anything. Focus on Jason. Send him every ounce of vibes, spirit and energy you can. The faster he gets better, is the faster I can be better. You can help me by helping him.

Please God?

No Words

The Delusions have overshadowed progress. No matter how many coffees I make or cinnamon buns I give out to the staff at Rehab it could not stop the inevitable. The current specialist won't pursue more treatment. It makes me wish I could administer it myself. We were sent to ER for a better treatment plan and he will be admitted. Lumbar puncture was done, bloods have been taken and we are getting more aggressive treatment. This is a good thing right? Tell me it is. Tell me everything I do is guided by the Almighty and it was pre-destined to be. That is what I have to believe. My amazing job I am going to lose over this. My younger kids barely know me anymore. I am running up more debt Than I know how to handle. But I have to hold on to the fact that in the end all my loses will be for the one gain of getting the Jason I had before Oct 18, 2015 back. It has to. Please tell me it will be?

Desperate

It was exactly 5 months yesterday from the day he was admitted into Columbia and the real crazy began. I couldn't bring myself to write about its I wanted to crawl into a hole and die, but God saw it to give me another day. I slept, not soundly, not restfully, just the body shutting down and turning back on like a well oiled machine. I am tired. In more ways than a human can be.

You know that scene in the exorcist when Linda Blair is really at her worst? Bring that to modern day and amplify it by 10 and you have Anti-NMDA infected Jason right now. He is not levitating or spinning his head around-yet-but it is bad. He is a aggressive and he is bigger than they are and he is not cooperating the way we need him to. This is typical. Typical of the disease, of the patients. But the problem is he is bigger than they are. I can't be there 24/7 like I want to and be the buffer between him and them.

You ever had your heart in your throat constantly? I don't eat or drink for fear it will mess up my heartbeat. That is how intense the feeling is. The baited breath I hold for when the doctors finally throw up their hands and say "fuck this shit" and lock him away in a mental institution or some place he doesn't belong keeps me on edge all day and night. Both hands tremble now, the left not as bad as the right. My worst fear is that he snaps out of it, right in the middle of us handling him like he is the devil reincarnate and take every emotional toil to take to scar him the rest of his life.

I'm scarred that's for sure.

The High Wire Act

We don't know why but the meds are not working how we want. I know why. It's because Jason has a high tolerance for things like his mother. But that sound arrogant even though I am
Not trying to be. The weekend Dr didn't know what to do. He came in dressed in a T-shirt and wanted to talk to me. He was scared. They all are. "He can't keep on like this. We can't control him."

Again I started my campaign about meds. This is not Columbia. On weekends they stock pile what they think they need for 2 days then Pharmacy clocks out at 5pm on Fiday and says goodbye until Monday. We can't redo a treatment plan Saturday Night..I already wrestled with Jason today and dealt with his screaming delusions. I can sit had way across the room and he wants me to get away from him. I can be right in front of him and he asks Siri to call me. This disease is leaving my son like a lion. You have no idea how much I would I would love to shoot the fair one with this disease 1-1. What I have seen it so to my Boy and for what it has done to me and my family I truly wish I could just punch it in he jaw and pull a mortal Combat Finish 'Em movie.

That is wishful thinking and not tangible. I have to find the proverbial equivalent. I'm exhausted. I'm drained. And I  going to sleep for a while to head out to the hospital to start this all over again. Somehow I have to balance work and the fact that I have a home, another two kids and a husband that needs some sort of attention from me at some point in this life. There has to be balance because the scale can only tip to one side for so long.

Yea right...balance (snort)....

Crazy Shit Jason Says

You have to laugh to stop from crying. My sick sense of humor helps and the fact that I apparently passed it to my son. I am sitting hear watching Jason in his zipped up posey bed. Shadowboxing and talking to no one in particular but always talking about me.

The nurses Aide walks in and he follows her with his eyes. When she makes eye contact in a calm voice he asks,"can you please let me out of here?"

She looks at me and looks back at him in disbelief. Just moments before he was yelling at the top of his lungs to no one.

She looks at him and apologizes, "I  sorry Jason I cannot." She says in a Caribbean accent.

He looks at me and snorts, "same shit different day."

Closing Time

"You don't have to go

Home, but you can't...stay...here..."

Closing Time-Semi sonic

"Death needs to be easier" was the last text I sent out. At the time I wrote it, I meant it. 2 weeks since his 2nd chemo and Jason has made gains. He is talking up a storm and carrying conversations and...

He is delusional. 

The inflammation in his brain has been accentuated somehow and he is reacting to stimuli that does not exist. As the inflammation goes away so will these developments but for now as we peel back more and more of his meds with his brain still Enflamed: this is real life.

He fights with no one. Punching and kicking some invisible invader always in response to  protecting  himself. His G-tube, much to my dismay, has been yanked out 6 times this week. Each time being replaced by nurses becoming more and more afraid of him. 

They called me today to try to calm him down. Typically I can. Today I watched helpless

On FaceTime as my son screamed at the top of his lungs and shook his bed like an animal

In a cage. 

It's 2 days since I have eaten. And 4 passed before that. My stomach in knots. Today they labeled him a danger to himself and Others and told me they can't keep him much longer at this place if his behavior persists. No place can take him like this and he can't come home so where does he go Arkham Asylum?

They want him to keep getting chemo. But what chemo takes care of has already been done. He needs immuno-therapy of some sort but this team only knows what chemo has done for others diseases like Leukemia and there is a hope that dousing him with chemo can have the same effect on this disease. But they don't know for sure.

They know he needs something immune but it is like they are offering an anibiotic for a virus: it won't work.

The treatment plan the team wants makes no sense and I'm not a doctor. But I am desperate so I yes them to death to buy myself some time. I want Jason to get treatment. Treatment that makes sense. Tired and riddled with anxiety I just don't know what to do anymore.  The stress of this is something I have never experienced. I once thought I hated people in this life, but with this situation I have effectively become like Jesus. I forgive every trespass and I beg forgiveness for those I have trespassed against. Jason can't get kicked out of here and I can't control him. Not sleeping and not eating will only get so far. I have to do something.

I have to go to the source.

The Strength Within

I paint my nails Essie metallic Silver. It's my Treat to myself. I can't paint nails for shit. But putting a thick coat so my nails look like they are made of Atomantium makes me feel better about myself. When I am stressed and want to fall on the floor and cry hysterical I stare at my fingers. I look at the slick solid color of metal coming from my nail bed and I try to remind myself that I am stronger than this.

The inside of me is made of some rock hard stuff and I am bigger than Jason's disease the nuances of life and the little bugaboo nonsense that creeps up.

I am made of something stronger. And I created Jason so that means so is he. There is more within us.

This is not all there is and this will not break us.

I won't let it. Just have to keep reminding myself.

Ground Hog's Day

I understand Bill Murray's frustration in the movie. Everyday waking up to the same shit and no matter what you do- the outcome is the same. Jason pulled out his G tube (stomach Peg) 3 times yesterday. That's a lot of trauma to that area. The aides are afraid of him, so they back away instead of going in. They think they are doing him a favor by leaving the gloves off -but they aren't. He pulled it out again this morning. 5 times in 2 days.

As we peel away more and more meds we see a more raw side of Jason. One ravaged by diseased psyche. It's not his fault. Thank you God it isn't permanent. But it is the right now. It is what is going to happen until we get to the part where something different happens. Where his brain is filtered of enough of the garbage that he can think clear and process.

Until then I need to get past this part in the mourning process. I have to get past frustration and feeling overwhelmed and upset and sorry and I have to accept that this is life as I know it.

This is my Groundhog's Day. I can only wince at what it must be like for Jason.

I Need Help

I ask constantly for Jason. Because he is all I can think of in this world. But today, I have to be selfish. I have to ask for myself. I have to ask that in addition to requesting Jason's recovery continue that on a side note ask God to cut me some slack. I took a vacation day today. I wish it were a real vacation day. It's more of a "Slave for myself" day. It is a day of errands I need to do to secure Jason Institutional Medicaid to help me with the relentless Dr bills my coverage keeps rejecting for one reason or another.

While I had all these plans to help me continue to douse  out the fire that is Jason's recovery there were other things afoot.

Firstly, physically I'm done. Jason in his psychotic stupor beat me up yesterday for preventing him from pulling out his stomach peg. He has no idea what he is doing and my heart and my mind know it. So when he swings at me with full

Force and makes contact the pain is taken and I don't retaliate. I try to get his hands and with this new thinner body I can't match the strength anymore. I'm bruised and sore and wish I could sleeP the entire day. But I can't. I have to go see him, bring him clothes and do his laundry and hope today is a better day.

Last night when I wanted to take an aspirin and nurse my battered body I wAs reminded I had two other kids. Tristan was feverish and wanted his mom. Samantha wanted to color and Carmelo was exhausted from being up The night before with the kids and needed dinner and sleep.

I struggled today to get the kids out the house to drop Sam off to school and get Tristan to the Dr. Tristan has strep and is contagious so it is a matter of time before the outbreak monkey bites Sammi. It may already have as she demanded a goodbye hug and kiss from him this morning. 

Carmelo had to work because his job has deadlines and I find myself eating vacation days while still answering emails through my phone for work and getting none of the important things I intended done.

I need to selfishly ask for a prayer for me right now. I need it more than anything.

Savage Dreamscape

"When you were just a stranger
And I was at your feet
I didn't feel the danger
Now I feel the heat
That look in your eyes
Telling me no
So you think that you love me
Know that you need me"....- One More Try/ George Michael

He is more vocal. His voice something I prayed to hear for months now everywhere. He talks about things in nonsensical ways. College and high school melded together. Home life and dorm life as if they are one in the same. He talks about fantastical things and says things that make no sense. Then he stops and looks at you. The beautiful sherry brown eyes encased in those black butterfly wing eyelashes. The kinds girls pay to have glued on but he flutters at you homegrown and natural. "Mom where am I? Why am I here."

It's like the devil taunting me. He is so crystal clear you can't help but answer. Hold him kiss him and talk to him breathlessly because there is so much to tell about what has happened in the last 5 months and he is finally of a mind to hear it and understand. And he listens! He responds appropriately! He is following! 

Then it happens again.

You see his eyes sort of frost over. He reacts to something not there; usually violently. He punches and bites and scratches like a wild animal trapped in a cage. No matter if anyone is touching him or not "let go of me!" Seems to be the first thing he always screams.

The aides are afraid of him. He hits with force and he intends to mame with every blow. 

I can't be afraid of him.

No matter how hard he hits or bites. I can't sit there and watch him punch himself or something that will eventually hurt him or try to pull out his G tube. I like a first responder go in when they back away. I charge him and wrestle him and hold his hands. He pulls my hair like he doesn't know me. He bites like a walker not stopping even if he draws blood. He punches and leaves a reminder that this is my life today at this moment and tomorrow when I hope to forget something in the mirror will look back at me to jog my memory.

My boy. My beautiful baby boy who has no idea what he is doing. Who is suffering this intense persecution in his brain is fighting demons that do not exist. He is confused and scared and trying his best and this fucking disease is not done. It still has some more to put him through.

The bruises hurt but that isn't why I cry. I cry because I miss my son. I just want my son.

The Guilt of Living

We took the kids to Build A Bear Friday. My guilt at not being present most days forcing me to take them for $60 teddy bears so they have something to remind them of me. Saturday saw Jason with Amanda and he talked a lot of relevant ramblings but the spontaneity unlike him. It's good that he speaks and all he talks about his college, class and his friends. It's better than good, it's awesome that he does that. Just I know my Jason and it's unlike him. He didn't believe Amanda was in front of him, he kept telling her Tita is in Florida. Her hair is different and he didn't have his glasses on, maybe that   Hindered him. I have tried to keep myself the same, hairstyle, makeup. The stress did things to my body I can't fix but I think at least my face is the same.

His neck is healing nicely. It is grossly scabbed over but the good part is that it is closed. When I see him scratch at it the crazy in me sees his finger punching a hole right thru. I get chills in my shins when he goes near it. That's like my spidey sense when it comes to Jason, my shins always feel like something is suddenly crawling on them.

He keeps pulling the G Tube so much so that it bled and they wonder how much damage is being caused On the inside.  I'm taking the little ones to the movies feeling so much guilt that I am not with Jason and he is not here. I know he is safe, I know he is good. I trust the people

Caring for him. I'm trying to learn how to live with this disease and I am also headed to see him right after.

I am going to tell him all about it.

Spring Forward

Jason's trach has already scabbed over.

One small step toward healing. One giant step at being more normal. It is Still a little hard to look at, but as train wrecks go: I'll take the sight of it. No more plastic tubes being switched out. No more collars being noosed around his neck. It took me a long time to touch it. They want to teach you right away how to care for it when they do the procedure. I didn't have the courage to learn that fast. I still saw it as I allowed someone to slice my son's throat and insert hardware there. The very immature side of me had to battle with that for a while. Soon after I was able to get over it I was changing his inner canular on my own, able to look at the gaping hole and not cringe or flinch. I am not really sure when that moment actually happened. The last 5 months are really a blur. When this is all over, God willing, that scar will be one of the very few reminders this has ever happened. I will always look at him and see the mended reminder of what we have been through. I wonder how long it is going to take me to be able to see it and not well up the way I am not just talking about it.

Primitive Instincts

There is a pink gauze with sticky backing covering the hole in his neck. At 9:20Am this morning Jason's Trach collar was removed. Woo hoo! Good times! You can see the gauze puff with air when he speaks and suck back when he breathes. It's gross to think about it, but I am used to it. Apparently, the hole in your neck will close on its own if you let it.

The body is an amazing machine I tell you.

It took 11 people to get Jason off a ceiling mounted television yesterday. Don't ask for more info on that. Just shake your head like I did and let it go.

Jason is going through an awkward phase. It gets worse before it gets better. He calls out for me like I am not there, I get him to acknowledge me and for a moment I register. Then he looks for me again. It's like watching Alzheimer's in reverse. He is coming back to me so this really is just temporary.

As his mom, it's hard. It's hard to hear your son ask for food and not be able to give it to him because you can't say for certain he will swallow it. It is hard to sit there and watch him cry out for you and physically stand in front of him and do everything you can to assure him of your presence and he not understand that you are there.

I feel like Patrick Swayze in Ghost trying everything I can but there is no Ana Mae to help me get thru to him. Today is really fucking hard. 

Like a Phoenix

I always mean to go back and "fix the blog" linking related points together so you can click away and get lost in old posts the way really good blogs do. But I don't have the time. On the Metro North I reached back in the crates and read some of my early posts. The posts usually written in muted lighting by Jason's bedside. The posts I felt like had the little bit of sanity I had left. Jason was bad, real bad back then. I was bad, real bad. I was emotionally drained and lost, terrified and battered. So much has changed from those moments, and so much is better. One would think I could just genuinely embrace the happiness and accept and move forward. But there is something called PTSD. As wonderful as Jason has been doing, I have some form of it. I am delighted by the good, and I thank you God for every moment. I thank you for delivering us from where we have been, for the wisdom of the doctors who have taken care of Jason and for the strength you have given us both. My current state does not in any way minimize my gratitude. It's all I can give after all the damage. There is damage left inside of me that I don't know how to fix or when or if it will go away. There is a fragility I never had before, I think it is a humble feeling That goes beyond anything I have known. 5 months have changed me as a person, physically, mentally and emotionally. 5 long months have taken their toll. The weight loss has helped in some areas, messed up others. You lose weight too fast you lose muscle. I don't even recognize myself anymore. In the first picture I was happy. I was big and my son was healthy and I was happy. I would take every pound back tenfold to have Jason back to normal again. When I think about now, everyone thinks I looK better but on the inside I feel so much worse. You go through constant trauma-well that is not good for you either. Like one of the other mom's said, "we are going to all need counseling after this."

Nothing will ever be the same again.

The WaterWorks

I'm a mess. I always have been. But every couple of days I have to run to the bathroom and bite down hard so that I don't wail out loud and cause a scene at work. Do you know how hard it is to do that? Do you know how fucking hard it is to feel your emotions pounding at your chest walls for release and you having no choice but to hold them back because you can't cause a scene ??

My Jason! My Jason! My beautiful Jason is finally going to have his trach taken out! They are closing the hole in his throat and he just gained yards at being normal again. 

I can't stop the tears from falling. So many times I thought this day would never come! My makeup is fucked up. I don't want anyone to ask me what is wrong because I just want to cry the tears of relief and agony and the emotions of FINALLY!!! 

Finally!!!

They are closing the hole in his fucking throat! Jason is being decanulated!!!

I'm Used To It By Now...-Telepopmusic

I was told about this stage. Where he is right now in the disease. It is a double edged sword of course. This part means we are definitely nearing the end. This part means there are some more things to come. Honestly, when they told me about it in the back of my head I rolled my eyes and sucked my teeth, "not my son", I thought to myself. But the thing that I have to keep reminding myself is: this is NOT my son. His body is being used as a vessel for this Maldita disease that has no mother. This insidious parasite of a virus is using my son to do its bidding. Like winter this year, it is leaving my son like a lion scraping its talons anywhere it can in his inflamed brain and forcing reactions from him that are nothing characteristic of who he is. It has won some battles over Jason, burning images into my brain that I will forever have to rationalize out. Scarring me as his mother and thankfully only me. Because the love I have for my son will never waiver, it will never fail no matter what this disease tries to make him do. I will never form an opinion against my son for anything that happens because he is my child, my baby, my life.

We will get past this part and as sick and sad as this will sound, I am glad we are here. It's just confirmed we are nearing the end. Jason is "emerging" from his state. He has shown up in short bursts where he has been able to text, or talk or play with Samantha and Tristan. But now he is on the cusp of it being longer and more permanent. He is coming out of the coma like trance he has been in and this stage means the coming out will continue until it is eventually permanent and he is back to normal. Jason will get better and be 100%. This is just temporary.

Suffer The Little Children

I have suffered. A lot. I lost so much weight a lot of people don't recognize me. If I were proud of it I would post pictures on Facebook and show it off. But I am not. Constantly being fed stress and uncertainty has taken a toll on me and 115lbs.

Jason slept last night for the whole night Iike an actual human being. This disease losing its footing on my son and now his body is taking over more and more. Rest heals the brain, helps the chemo do its job. Rest restores the body. Up until our visit last week at Columbia Jason had not slept in weeks. Delirium takes hold of you when you don't sleep too much, imagine not at all? We are entering a new phase of this disease and I have to lace up my kicks and get ready for the new normal to take hold for a little while. Like the 7 deadly sins we have these things to go through, in sequence before Jason's disease "Give Us Free".

Jason is cursing- up a storm. Verbally lashing out at anyone withIn ear shot. Thankfully this only started today. Thankfully Sammi did not hear any of it. We are grateful that we are at the part where he is constantly vocalizing but I am heartbroken to know that I still have to suffer more. I passed the physical with Jason, dealing with wrestling with him and him punching and kicking and taking this smaller body to try and control him as well as my bigger body did. Now I have to deal with the psyche part of this test. The one where my son will curse me out and those he loves because the inflammation in his brain has control. This is what Tourrets is like. Hopefully he will pass out of this stage quickly.

You've Come A Long Way Baby...

I have kept him from public view since this began. His worst, thankfully none of you will ever see. His best is yet to come. This is the NOW. This is the trailer to him being better. This is a moment of my and his private life I am willing to share. He speaks in bursts. Sometimes making sense and others mumbling incoherent conversations the medication helps him answer himself. He cannot make phone calls yet or carry conversations. Although some of you have had him text you in a moment of clarity or drug induced delirium. Bare with him. He has fought a hard fight and is still going. He will be clear. He will be 100%, he just needs a minute.

He asked for her all day. When she came he picked her up and put her on his lap and played games on the IPad. Little by little he is coming back. Little by little he is becoming more and more of my Jason.

Ever Wonder

I don't like to think too much about the future. You would think I would, but I don't. That analyst in me doesn't like to think what happens if his levels creep up past the 4 rounds of chemo that seems to be standard. At some point this disease must enter remission of some sort because no one can be doused with chemo forever...

I don't want to think about how many more times this will be put in his arm.

I just want to hope and pray and believe. Because thinking hurts too much.

Flashback Last Sunday: Play Your Position

The head nurse came in to speak to me. I could hear the walkie   talkies of security still in the hall. "I know you don't want security in here but we called security because I can't have my nurses getting hurt. I am going to have to go to the ER because I banged my head on the wall."

I like this nurse, I knew her from my first go round at Columbia, and I genuinely would never want to see her hurt by anyone. I could empathize with her, but I also have to advocate for my son.

The shaky ponytailed resident who I had to become "Irene from Farragut Projects" on stood behind her, trying to offer silent moral support.

" I really feel for you because you got hurt. You know the last thing I would want is anyone getting hurt. But your injury is (pointing to the resident) his fault."

His eyes grew wide at my blatant accusation. 

"We didn't just come in off the street. We were expected for days now. You knew how Jason could get. Him and his team were not prepared. When I walked in and Jason was still calm I told you to get him seroquil. I even told you how much to give him. You came back with 25mg which is less than his regular dose and then you want to call security to clean up your mess because you Panicked? You didn't listen to me-Fuck that! Because you can't count you think I will allow you to call huge guys to come in and begin yelling at him and holding him down to make you safe?? If everybody plays their position nobody will get hurt. I'm here playing mine, if he played his -you-wouldn't be headed to emergency."

I know I will be The topic of gossip among them for days but I told you before: IDGAF.

IDGAF

If you see it from their side, you feel sorry for them. The residents I bully around the minute I step foot in Columbia, but then again if you know anything about my story you think differently. Jason was scheduled to have a lumbar puncture by the same trembling residents who did not know what to do when we first walked in. With all their medical training they decided to meet his attack of agitation with a call to security instead of getting him meds.

I declined.

I was asked why, and articulately explained and the response back was more of a "well the Dr wanted it and it's scheduled."

Patients with limited English, those not as well versed as myself in doctor bullshit, would have conceded. They Would have thought, "Oh no! I can't say no because the Dr is telling me the other doctor wants it." For a second i thought of how many countless people have had this exchange and conceded because the tone they gave made you feel like you did not have choice.

But then I came back down to reality.  Jason doesn't have that problem. A lumbar puncture was not necessary. Nice to have but not a factor for treatment. It's a clinical snapshot of where he is with the disease that acts for a marker for future patients not necessarily helping him right now. While I would love to help my fellow man because this disease has got to go, this day was not the day to put Jason through more trauma. Jason is my concern at the moment, all others are secondary. This medical team was not equipped enough to handle his arrival, I'm going to allow them to stab him in the back?

I actually became amused at the blatant level of pushback I was given. In 24 hrs since I been there the Dr's grew a set.

I smiled before opening my mouth again, genuinely amused by the audacity.

"Let me preface my statement with some colorful language: I don't give a fuck what the doctor wants. Last I checked I did not give over custody of my child by consenting to treatment here. You are not putting him under general anesthesia for a lumbar puncture."

"Well, we will just have to confirm that this is ok with Dr Hoenig." The Resident came back again. Not skipping a beat in our exchange. She clutched her book and tried to give me a concerned look that was masking a scowl.

I smiled again because I actually wanted to laugh. I could hear my tongue unsheathing it's double edged self from its muscular soft coating. It was about to slice.

"You can make as many phone calls to Dr Hoenig as you'd like. You attempt to schedule a lumbar puncture on my son after I have just declined and you are gonna need security and NYPD ready because I will make sure the trauma team and the OR will be prepped and ready for YOU and every single one of your asses.

With a look to the floor and an about face  the entire team was gone.

You know Jason didn't get that lumbar puncture.

Hope for Life

Tristan has gotten so funny lately. If Jason was fully coherent he would love to interact with him on a regular basis. Sammi has gotten really smart. She sees Jason and becomes the "teacher" asking him questions about what he sees or where things come from. She stares at him patiently with her big marble eyes and waits for him to respond, grabbing his face and saying,"look at me Jason," when he doesn't respond in a timely fashion.

I can't wait for the day he is well enough to enjoy them more. I hope in his lifetime they find the cure.

Take A Rest

"But you were just with him three whole days! When are you going to rest?!?"

I don't expect anyone to understand. Why would you? It's my child not yours. My last name is on that boy. The boy I birthed and raised and love. I don't expect anyone to understand why I call several times a day, FaceTime, check-up, talk with his doctor, get copies of his weekly Med regimen, contact insurance to make sure all is well, and wake up in the middle of the night on my bodies times intervals to randomly face time and speak to the nurse to keep people on their toes.

Jason is getting better. He isn't my full "Jason" yet. But I see more and more of my boy everyday. Why I do what I do is frankly none of your fucking business and I am not here to help you understand that. The incredulous confusion is your issue, the safety and well being of my child is mine.

You Are Capable Of More Than You Know

I hate the word Journey. I don't know why. I think the reason why is because it is used too callously now a days. Everything everyone goes through now is a journey.

I went on a journey to get Chinese food. 

I was on a journey for a work project.

The word sounds like a joke to me. Nothing about this life right now is remotely funny. Then again, with my sick sense of humor every now and then it is.

Jason recited his address yesterday. He remembered a photo from his high school senior trip.

These are things months ago when he lay lifeless on a ventilator I never thought i would live to see or hear again. He is not 100% yet but he is now closer to that number than he ever was enduring this illness. The chemo therapy is shutting his immune system down and with the flu prevalent I am once again stingily saying no to visits. Just for a while. He is already asking for people by name and texting some of you. Bare with him as he communicates. He gets very excited when you write him back and I think the excitement scatters his thoughts so his comments then become illegible. With FaceTime and snapchat as he gets better I will let him communicate with you guys until you can physically see him.

Know that I only keep people away because i am trying to protect Jason. I know how much you all love and miss him and I am committed to doing anything I can to get you guys in contact. 

He is resting now, comfortably in his room in rehab. He could use some recent photos of you guys, and some new music recommendations, recommendations for games or apps he might like and more cards wishing him to get well as I have already read him the ones he has.

As always your continued prayers for recovery are paramount.

Thank you for all the well wishing and all you have done so far.

Hey Mon-Time TO GO TO WORK!

"Take me to Ten eyck" he says over and over. His fake looking eyelashes capping around his wide eyes. He acknowledges more people, says more words. He texted a few people and sent God knows what out on Snapchat. He walked the halls of Columbia, amazing the doctors and nurses who saw him near death only a few months before. He is on his way back!

Finally got Jason transferred this morning from Columbia. I have never been so happy to see a hospital or nurses or doctors in my life. I have been with him since Sunday. No sleep, no shower, no change of clothes. Just brushing my teeth, raking fingers through my hair, washing the nether regions with baby wipes and putting lotion on my face.

I sprayed Jason's near wasted bottle of Axe all over me. Put on my glasses a la Clark Kent and put the lipstick everyone compliments me on.

I'm headed into work.

Say nice things about me at my funeral.

Do You Believe In God?

The gentlemanly aid asked me. I hesitated before I answered. Not because I needed to think about the answer, but more because of the audacity of the question. Hasn't everything I have done thus far proven my belief in God? Do I have to walk around with my Bible in hand to prove my belief in God?

"Of course."

I said annoyed, rubbing the tears out of my eyes. I haven't slept. I haven't showered. I smell like sweat and Jason's piss. My hair is knotted and disheveled from all the times Jason grabbed me.

He has been agitated since he got here and I tried desperately to get us out of here and back in rehab before he had an episode but nothing I did worked.

Cursed out security for coming by in an attempt to manhandle my son. Jason sent one nurse home with a mild concussion. Yanked my hair and punched me.

Jason has been in rare form.

I have done a lot of things these past few months I never thought I would do. The nightmares are abundant and I am sometimes grateful for the insomnia.

I pushed back Jason's trach into the hole in his throat because he decanulated himself. He pulled out his trach in its entirety and I, standing there and wrestling with him had to push it back into the hole in his throat.

All this because a perfect storm of insurance bullshit, lazy ass admissions people and newly learning residents all suck at their jobs and I have to pay for it.

Traumatic re-intubation. Jason is bleeding again.

Supposedly God is not supposed to give me more than I can handle.

Can someone please let him know I had enough?