Because God is Good All The Time

Praise God for all of his favor.

Test of Patience

Jason is having a setback. Please pray. Don't just say he is in your prayers. Please mean it. Have the dialogue with God. When the chorus of prayers started, he heard you. I need him to hear you. I need you to be loud.

Please.

Welcome To The Abyss

It's endless.

It is.

From daily life to scheduling doctor's appointments for the best specialists for not one but two very distinct diseases. I want to be Negan-like ruthless in my pursuit of scans and second opinions and doctors that can help Jason and now help me.

But I find myself more like Rick. 

I am tired.

I have a second opinion weeks away with one of the best. I worry what the cancer is doing inside me until that time. Worrying is praying for something you don't want. So I convince myself that I am not worried. I am just overly conscious. Conscious that a foreign item I have no control over has Insidously housed itself inside me. I have to be patient in finding the exact way to take control of it.

Cancer doesn't hurt. That's a fucking lie. Pain is what started my investigation that found it. 

I have check-ups for babies and my self and the husband and all these extra scans that will make me glow in the dark eventually. I am hyper sensitive on both ends of the spectrum because I can't move on the grief scale from anger.

I am grateful to God for the revelation of what I carry. I am grateful for the help and everything I received to help Jason make it this far in recovery and I pray so hard for more, to finally get him carried over the threshold to conquering this crazy ass disease he has.

Even with all my gratitude for every blessing - I am so angry.

I just don't know who I am mad at.

Sore Loser

We stepped back a little. Jason's Hallucinations are up. Nothing horrible, (yet). A gentler, calmer hallucination. The problem is, a step back puts us all at edge and less at ease. We have seen the other side. We are all terrified of going there. Hallucinations are usually the precursor to a more ominous Jason.

In other news...

I have a chance at saving my kidney. Laparoscopic. See usually at this part I would say I am already fucked you can't be more fucked -but apparently you can. I can live on half a kidney if need be, and so far I have a spare. If I remove this entirely and something forms in the other that is where the "more fucked" option comes in. So at this point I am making every effort to save it.

But the terror doesn't come in that. The terror I have right now is going offline. Not being able to be there should this ominous warning from Jason's psyche produce something more. No one in this world loves Jason as much as I do. No one in this world could understand.

Thinking about him going full hulk and needing the hospital to subdue him the only way they possibly can with cops and sending him out to a hospital that I cannot run to is killing me more than any cancer could. Thankfully we have not come to this. But I need to make every effort not to.

I usually do this unmedicated. But now I need the meds. Now that fucking crack in my psyche is oozing and my poker face has eyes that glisten uncontrollably. I still don't cry, but I definitely can't hide the emotion as well as I once could.

It's a lot to hold in. Imagine holding back a tidal wave with a screen door...

You got me. You got me good. You blindsided me while I was in the middle of a war with my son and reminded me I am mere Mortal. I always thought Jason was my Achilles heel, but apparently I have  another. 

There are many levels of pain, and when you think you reach your threshold, you get reminded there are more.

If you ask me my programmed response is "I'm ok" The second response "I am alive"

I can't admit that I am actually a mess in the middle of two wars: one for the life of my son and now for my own life.

I am in no way shape or form prepared to lose either. 

Party All The Time

Jason called me from the hospital last night at 10pm. He was dressed and letting me know he was going to "the party". Hallucinations holding on a bit too tightly that he is still in college and chasing girls. Not in an in-patient facility with A Gtube. He dressed himself in street clothes and was getting ready to hit them streets.

Me: Jason you can't go I told you, it's Wednesday. 

Jason: so I don't have class tomorrow.

Me: I said no.

Jason: what do you mean I am 18! You are so annoying! (Click)

He wouldn't answer my calls after that and turns out The CNA was able to talk him out of it.

I relayed the conversation to Carmelo and we both kind of laughed. I squinted my eyes at the ceiling:

"THIS AND CANCER Bruh?!"

Dayum.

Dark Sense Of Humor

"Worrying is like praying for something you  DON'T WANT To Happen."

Best advice In The FREE FUCKING WORLD.

A Post That Has Nothing To Do With Jason...

I think "What?" Is the most annoying question. It's infinite in answers. You never say it because you didn't hear what someone said. You heard them. Just what they said caught you off guard. It knocked wind out of you or punched you in the chin and you did not expect it. What could be the start of any number of confusing things someone wants to know and no matter how many ways explained can still cannot comprehend the answer to.

I have been sick recently. One of those things you can't seem to brush off forcing me to go to the doctor. I don't have time to wipe my ass in peace much less find time for a doctor for me. I have Jason, a husband and two little ones who need so Much I will cut my left arm off and feed it to them before I take a morsel of food to my own lips. What makes you think that a pain or cough of my own would have me scrounge up enough time for me to go to a doctor?

But I digress. I did. While searching for one thing. They mistakenly and thankfully found another. RCC. Renal Cell Carcinoma. Newly diagnosed, still wading through the water to figure out- the whys and the wherefores- but it leads me back to the opening of this post:

What?

I like doctors who are direct. Hurt my feelings in a business tone outright. This way I'll expect it and not be hurt further later.

What?

I have (3) kids at home. I don't have time for Renal Cell Carcinoma!

How the fuck did I get that?

What?

I called 3 of my oldest friends. After I told each of them they all ended the call by telling me they loved me....And I was able to bullshit about it. Like a normal person, pissed about the day- but I'm pissed about my life...

- so like going thru all this shit does it means I am God's favorite? Like its Jesus, Job then me?

- like can I take knee? I am really tired and sweaty from playing and I would

Love to just take a knee and step out of the game for a minute... Ya know?

- my son get's a rare brain disease that is 90% towards only attacking girls, fights for his life for a year now and by the way I got cancer...

This blog is like church to me. I come here when I feel bad or sad and writing stuff sometimes makes it better. I don't read comments. Not looking for advice. Just not holding it in...sometimes...because I just...can't...cry...anymore...

These words are my tears...

Jason is getting better. And the world goes round. 

You Have No Idea What You Can Do For OThers

This is the Star of Daredevil the TV Show with Jason. Jason has been ridiculously happy all day...Thank you so much!

Radio Silent

On the 1 year anniversary of something you usually celebrate. When you think of an anniversary you imagine there should be some sort of joy. Right? Yesterday I preferred radio silence. I didn't post because I was searching for Zen and absorbing life as it is now. Jason text me and he facetimed and I had to end the calls quickly because he is so much like "MY Jason" that I want to burst into tears and wail. He is playing Xbox and asking for money, and asking for clothes and doing every pain in the ass thing Jason circa 2015 did before he got sick. Yet in my mind's eye Jason all plugged up in ICU was just yesterday and I am afraid. I am afraid to accept this and be happy because what if I wake up and it isn't real?

So I am doing what I know how. Walking dead style. Getting up and doing what is expected of me. Not really knowing how, but understanding why. Work, babies, school, home and taking it one day at a time. Being a consistent drone about real life. The only way to live right now is to be   For lack of a better term: mechanical. Maybe one day this NEW normal will be normal and the shock of acceptance will have faded away and I will just live and love my old/new Jason.

It's really all I can do right now. It's all I can handle.

Close To The Vest

The tears can't come anymore. It is almost like the faucet broke. The emotion is so deep it starts with a rumble deep within that culminates into a shake. My heart goes off beat, that's how strong the vibration is. My eyes can't focus. The rumble is too close to my ears. I read Dr. Vargas' s note and my eyes glazed over. I was blinded for a moment.

Tomorrow makes 1 year since this started. 1 whole fucking year. A year not being able to breathe. A year of drowning. A year of begging and pleading. A year of tests and scuffles. A year of blood. A year of sweat. A year of tears. On the 3 Hundredth and Sixty Fourth Day God loosened his grip on my throat and let me breathe. The air filled my lungs as if for the first time in my life, filling every pocket, every bubble. Giving me a relief so powerful I can only shake. She gave me news, I have waited to hear for Three Hundred and Sixty Four Days. News they always promised me would come but never came. News that has been close, but never, ever here...

Fantastic news 1 Day before the birth day of this fucking spawn of hell disease:

Jason's titers...

Jason's blood...

Jason's behavior are finally all in alignment.

Jason disease is on its way down. Lower than it has ever been. Jason is getting better.

The Cosmos And All Its Wonder

There is so much I don't say. As I put the book together I wonder if that is the place to release it or not. Jason has the lowest levels he has had since the disease started. He's pseudo Jason still, not quite Jason circa pre Oct 18, 2015 not exactly Bizzarro Jason of July 2016. Instead he is this calmer and gentler Jason that is trying really hard to get back to normal.

He is eating. Loving homemade meals and having helpings of seconds and thirds. Still with a Gtube in his stomach and taking meds that way. He finally stopped yanking it out. Finally not having too many cursing episodes and thankfully no hitting. The nurses were a little hesitant as some of the old rotated into new schedules with him but now they see. He can be given a little trust to stay human at the very least.

Thank you God for all of your Grace.these days I never thought I would see. My heartfelt gratitude for all those who have prayed for this time to come.

The Beatings Will Continue Until Moral Improves

I remember the heading of this post from a vacation I took. I always thought that's where my parents got it from. Now I think maybe that should be the NMDARE moral. We are back for round 2 of Retuximab. We will continue with chemo until the disease is beaten back into submission. This time it was in an infusion center. Everything about this visit went so smoothly I still think I dreamed it. We got their by ambulance, was put in a small private room, got the transfusion and left. No incident. Jason was calm the entire time. I ordered him His favorite Spanish food and I got him a special treat. He asked for a haircut and coincidently my hairdresser is in the neighborhood. I made a phone call and got a local barber to come to the hospital and give Jason a fresh haircut. He looked amazing.Thank you God for all of your blessings. Please I beg you to allow them to continue.

The Fight for CBD

I started the conversation for something still not available to NMDARE patients in NEw York. CBD. The non-hallucinogenic cannabanoid that offers a relaxing effect as well as promotes the annihilation of tumor growth, and tumor blood supply.

Jason was on Haldol. A well known drug with a very high dispensing threshold. His behavior limited our options. The Hulk needs to be held back with something. He stepped up from zyprexa to Haldol. Haldol caused him Parkinson's like effects that required him to also be put on Cogentin.

I wasn't happy about this. But there was little choice I had. I am not a pharmacist. I can only go by what I am offered and fight down from there. I did my own research and found CBD. I am advocating for it. Working on a major  step toward it and I always feel like Noah back in the days of the ark. With doctors and a team that want to stick with what they know and what someone else proved worked. They are afraid. Hesitant. Unwilling to make a commitment like me towards advocating it. It's illegal still in New York and NMDARE is not on the approved list to have it. But I can't sit idle. I can't wait for someone else to be the pioneer. I found something that may be able to change the world for sufferers of this horrific disease. I found something that may help Jason. I am going to ride this bitch until the wheels fall off. I won't be in JAMA but maybe the doctors will. I'll take the risk and the fall of it fails. But I will do absolutely anything to try to help Jason. Anything.

The Walking Dead

After Jason's birthday I couldn't talk or write much. I was sad. Jason turned 19 sedated and zombie like in his hospital room. A smile came thru here and there with a lucid moment. Nothing really normal. The Parkinson's like effects of his medication affected him thru out the day. It broke my heart more to watch him tremble. I needed a minute because that dark well of hurt and depression kept begging me to take a dip.

I prayed a lot. Thanked God for his life and forced myself to be grateful for everything.

I felt like The Walking Dead...

Ever watch the show? And you see these little pocket of survivors and you try to figure out yourself how you will do it? Then like when they found the town and they met more people, good people- that sigh of relief that enveloped us all?

There's a group. A support group. A group of people with exactly what Jason has, filled with people with similar experiences or the exact same stories. The group is over 2000 strong with these fearless and fearful people all looking for answers, questions or just comfort.

I started this blog because I couldn't find anything. Nothing relatable. Nothing useful that showed the human side of this thing. So far I had only met one other mom who knew what this pain was. And as much as it breaks my heart to know this, I have a little comfort now. There are others out there, at different points of the disease.

I found a town.

They are all on Facebook.

https://www.facebook.com/groups/ANTINMDARE

Try To Do Better

I had my meeting with Columbia today. No lawyers involved. No lump sum being put in my bank acct. Not looking for money or notoriety.

I was looking to be human. My eyes hurt, my chest hurt. Dredging up the muddy parts of this crazy life of 11 months and 1 day- My heart hurts. I relived moments i wanted to forget. Moments i promised myself i would not have to

Go back to. I want to ball up in the fetal position and cry. But I won't. I can see the GIF in my mind's eye, "Aint nobody got time for that!"

You are exceptional, they tell me.

You are amazing, they tell me.

When you hear things like that really good feelings are supposed to envelope you and this euphoria should spread.

It doesn't.

I dont feel any of that.

No matter how many teary-eyed empathetic people tell me this i feel broken. I feel like crap. I miss my son how he was and I just want him back.

I spoke to aome Columbia Chiefs, wio took time out of their day to speak to me. People who listened and implemented changes and worked on the things that went wrong while acknowledging what went right. Parents like me qho have no idea how i have done it. And praise me

For not showing where I cracked. I wanted to be fair to those that I have crossed paths with that were not so great because we are all human. As time has helped smooth over some of the hurt and pain, the forgiveness I seek from God for all my offenses I want to give to others because we all deserve it.

We all need a chance to make things right. I hope that those i spoke of know this. I didn't want a witch hunt or a beheading.

I just want change.

For me.

For Jason.

For the Jason's yet to come.

Relapse

In the middle of recovery when things were finally looking better, the Hulk kept showing up. Not calm Brooding Hulk. The kind of Hulk that would pick up Loki and swing him around real Quick. The doctor's always cry disease, but in my heart I didn't want to believe it. I gave in and did everything they said and still he is doing bad?!?! I gave him the harshest chemo for this shit-and STILL the disease makes gains on him??? 

I stayed int the hospital with him to get a lumbar puncture, IVIG and once given truth to the whispers of relapse: Retuxamab.

Jason's B cells are up. He has 12. For a total of 1% B cells. He got retuxamab.

It's like...

I wish...

Perhaps the words are caught in between my fingers and my throat...

When the doctor first said it. I needed a moment to let it register. Mechanically I consented to do whatever needed to be done to counter a relapse but emotionally I am just caught. Deer in headlights. Hypnotized by bad news on top

Of bad news.  At least if he tagged 100% before this happened I would have a little more sunshine reserved for this rainy day. But he didn't get up to it yet. We didn't burn the last bout of the disease entirely out of him Before this happened.

How much longer? 

Bitching and Moaning

When someone bitches about having a rough night's sleep in their bed. Please show them the below picture. This is where I slept last night. 

No More Tears

I don't cry anymore. My body hurts, there are aches and pains and it's ugly. So American Horror Story horrifically ugly. But that emotion to bring the tears doesn't shine thru anymore. 

I was home last night, trying to relax because the crazy with Jason has been about all weekend. But I felt it. Bruce Banner was there all day. I just felt the Hulk would come, when I got the call that he was being difficult I knew I had to stay the night. 

2AM the Hulk wanted to go catch the Megabus. I had to subdue him and the scuffle that ensued broke a very expensive bra and injured my little pinky. I always get asked if I am ok. You just watch me dodge a fist fight and hold down the exorcist and I guess asking if I am hungry or want a cup of coffee is not appropriate. The appropriate question is , "are you ok?" and I'm used to calmly and mechanically answering "yes". I don't cry, my heart doesn't race like before. The adrenaline is there in the scuffle and gone when it's over. The animal I fought with wasn't my son. The animal that tried to kick and punch and bite is not the boy I raised. It's the encephalitis riddled zombie he has become. He's essentially a real life version of the "Walking Dead's Penny". But she only comes into him in spurts and in real life I have the certainty of him being better. 

But I most certainly am The Governor. Choosing to be his only handler because he is mine and no one else would

Understand. 

The fit left almost as fast as it came. A PRN later he was getting his regular meds. His nurse afraid of him. He never touched her and she wasn't involved in the scuffle but seeing was enough. She was scared to give the meds and I helped her. Then the Hulk decided to show again. 

After 20 more minutes and his aide's help it was over, he got injected with another PRN anyway and he chilled out.

Obviously I got no sleep. I came home dressed the babies dropped them off at daycare and headed into work. Ready to field all the OMG questions my face will merit. I am tired. Like my soul is tired. Thankfully the questions didn't come. Not sure if it's an astute means of letting me get thru work without a field of questions or a general population of people who don't really care or want to hear about it. Regardless the reason, I am grateful. Grateful no one makes me live the story over and over. 

We had a bad day. Now we have to shrug it off and see what we can do to make better preparation for the days to come.

Maybe that's why I don't cry anymore. I know this is only temporary...

A Mother's Love

A living death is the way to describe it. To watch your child day in and day out in the condition. Never knowing when or how it will end. There are all these stories and all this promise, and nothing. Nothing that you recognize as peace ever really come to fruition. So you pray and you hope and you cry. Until one day you can't cry anymore. You accept the broken, and concede to be beaten. And you take your lickings as they come because that is the only certain thing, and you are used to it.

Jason needs a lumbar puncture. My job needs someone there. My kids need a mom. My husband needs a wife. 

No matter how well I pay or how much I beg for help, the people who I expect to help me won't and the courtesy of strangers carries me through more often then not. 

This disease has made my life a fucking mess. It won't succeed until I am fucking homeless.

It Never Fails

After I post something good, the ugly comes. Almost like the cosmos thinks we are having too much fun. Jason was maniacal last night. I had to drive like a bat out of hell to subdue him. I'm tired. I want this over already.

A Picture Worth A Thousand Words

Aesthetically he is close to 90%. We still have work today... But through God's Grace and Mercy this is how far we have come.

Progress

Yes, that is Jason and his friend, playing XBox

Broken-hearted

The little things are what make your heart break the hardest. For the first time since I can remember I am Not buying Jason school supplies. I am shopping now for the little ones. Instinctively I keep going for loose leaf and college ruled items. 

The babies don't need that in preschool and Kindergarten.

I'm crying in the crayon section. Trying to focus, and wiping tears from underneath my aviators.

I miss my boy.

The Last Ride

Chemo over the weekend is convenient for work. Inconvenient for family. Carmelo and the kids have no mommy for the weekend, then before you know it I am a blur for 5 days before they get 2 days with me again. I need Jason better. I need to start rebuilding our life. For now I am on the train, on my way to one hospital, so I can take an ambulance to another and deal with new people, and protocol and bullshit. Fight with Jason or stress over keeping him calm. Team no sleep, Team No eat. Team saggy ass and hair falling out. This is life until the end. This disease is a muthafucka I tell you.

Speak Of The Devil and HE Shall Appear

Team no sleep captain here. I slept at the hospital again but this time Jason wasn't on a warpath. He sent me to hell once or twice but that was all. Sleep deprived, still sick I manage as a direct descendant of the "Hey Mon" family. Remember In Living Color?

"Hey Mon! time to go to work!"

Had to get up drive from Valhalla to queens and get ready for Baby daddy court. I can't take the bill collectors on my phone and papers crowding my mailbox. I can't take the constant harassment for something that is so simple to fix. See Jason's "Bio-Dad" as I heard someone call him, works for a glorious Union who will pay out of pocket medical expenses for him. All the bills that ride me now can be paid and made to go away. If "bio-dad" would try to help. He never has, never offered. Hasn't visited. Hasn't called. With 3 near misses from the Angel of death he has never cared to see if Jason made it.

Me alone gets this handled. But I need help. So I asked for it.

The judge heard this shit and couldn't believe it! He admitted it to the judge that he is a POS who does not care anything for his son.

The judge cared. 

Today under oath "BIO-Dad" swore to not know anything of Jason's condition. 

Meanwhile his mom visits everyday, grandpa and step grandma have prayed for Jason all over Facebook. His brother had "the talk" to try to get him to see Jason. I scooted my chair over on the table hoping the blast from the lightning bolt that should hit him as he sat there and lied under oath doesn't residually get me too. 

Disappointingly it never came, (insert eye roll). He claimed to be Completely unaware of any medical bills. Completely unaware of Jason being near death-ever!

The judge ordered him to visit Jason today. 

His wife stayed in her lane and respectfully stayed outside. The least the witch could do.

I want to thank The Queens Family Court for facilitating the first visit Jason has ever had with his father. It took 18 years, (he met Jason when he was a baby and again when he was 3).

He actually said, "Hi Jason."

Thank you God for all of your glory. Even if he doesn't remember it ever, thank you for giving Jason this.

Godzilla

Jason is Godzilla. They hiss his name like the panicked Japanese villagers when he comes down the hall because there is no telling what version of Jason is coming. He had an episode. 3 in one 24 HR period. Chemo is 2 days past due. This is what happens when you let the disease get over on your anniversary. Your sleep deprived, summer respiratory infection riddled mom has to roll out of bed and drive like a bat out of hell to your hospital to stay Godzilla watch. The alternative of calling strangers to handle you and take you to another hospital with more strangers that don't know how to handle you, hurts her heart too much.

I love you Jason. One day when this is all over, I just want to see you healthy and well. Then maybe I will be impressed enough with this disease to cry my eyes out on all the shit it has done to you, and done to me.

For now, ain't nobody got time for that.

Hurry Up And Wait

Jason's been good. But if this disease teaches you anything, it wants you to know it is as ghetto as it fucking comes and keep your Voltron up. The Hulk still lingers in Jason. His body still makes the anti-bodies equivalent to the gamma rays that turns mild manned Bruce Banner into something more sinister. Last Thursday, Jason decided to trash his room. I have been sleeping over at the hospital since Friday night. Taking my place on the beat up and stained pull up couch directly across from him. Watching as he gets up several times a night to give me the middle finger, ask me what I am looking at or tell Me to go fuck myself.

"Do you think it could be a demon in here  mommy?" An aide asked me. I get it. I wasn't mad. Religion holds some of us so tightly we can only imagine the supernatural is bringing on this extreme crazy.

"I don't." I responded.

I think he is sick. I think God is in control.  I think the mind is an extraordinary thing and while we sometimes think we are unraveling the mysteries of the universe God reminds us that we don't know shit, we need to stay in our lane and play our humbled positions.

As I blow my nose for the thousandth time and wrap up the never ending green phlegm I try not to cough too much into my mask. The contagion neurotic drone in me terrified of getting Jason sick. Hopefully we will be out for Chemo again this week.

I waited for the nurse to give him his meds before I left to go visit my home and my other kids.

Life will be better one day. 

Brotherly Love

Thank You God for the blessings of my boys

For Those Who Haven't Seen

We are coming along.

Not 100 yet, but getting there.

Baby steps...

The Medication for The Medication

Jason has been calm. Dare I say Bruce Banner playing with Zen. New med subdues him and keeps the Hulk from coming out. 

Baby Steps

I had to stay away for almost a week. Summer colds with phlegm and cough should not be brought around Jason. Calling everyday killed me. When I saw him the first thing I wanted to do was hug and kiss him. I had heard he had been doing well, more verbal, more lucid. Able to carry conversations and be rational. When I saw him he outstretched his arms  with an expressionless stare. I hugged him and kissed him, praying no germs were exchanged. I bought along his brother/ sister and his cousins visiting from Texas.

He was happy to see them and gave a little smile. Watching them as they dispersed themselves around his room. I brought his 3 year old cousin Davin in front of him, and re-introduced them as cousins. Jason said hi. Matching Davin's responses word for word appropriately. 

Tristan noticed the exchange and came to wedge himself between his brother and his cousin, "No Davin, it's my brother Jason."

Jason smiled wide and looked at Tristan,"jealous?" He said laughing.

My son is in there and he is slowly coming out.

Conversations with Jason

Is This The End?

"Mama always told me it was gonna happen but she never told me when...She told me it would happen when I was much older...is this the end?"-New Edition

So much has happened. Too much in fact. Things that I had to lock up because if I let them thru the crack in my psyche it would blow a bigger hole and I wouldn't be able to function.

Good things.

Bad things.

Awkward things.

Sad things.

Have all happened and I have rolled with the punches and kept it moving. Going to work, handling the family. Handling Jason and this illness like it is my job and I am paid to do so. Handling the emotions like they are not mine. So far, I am making it. I think.

Chemo again. All I had to do was remind them of Tiger Mom and Jason got in ASAP. He is here, being encephalitis riddled Jason with a few cameos from Jason circa 2014. Today he got up and darted out of bed almost ripping the IV out. Trying to pace round and round in a circle. I grabbed him, put him in bed and stopped it. I had seen him do that once before. It's scary. He is bull in China shop determined to take the stride. I am beaten down wonder women determined to hold him back. I am tired, haven't slept since Thursday. Fighting the protein packed Bruce Banner into not turning into the Hulk. I talk to the doctor about what this means. "I have seen this before", he said smiling,"it happens when the disease is near its end."

I watched him like he was talking about somebody else. "Wow, that is reassuring." I said keeping an Olivia Pope business tone. He and the two fellows left. When I heard the door close I broke down like someone was beating me. The aide asked me a million times if there was anything she could Do. I couldn't respond. Thank God Jason was sedated because I couldn't stop wailing. Everytime I tried to stop I cried harder. It took 2 hrs before I could stop. Mercifully God kept Jason asleep for 2 hrs and 15 minutes. Enough for me to compose myself. That nervous breakdown is close too. 

Maybe I am going to be like that Marathon runner who makes it to the end and collapses on the line. I only asked that God see Jason through this. I never said I had to come with him. I don't know how anyone could be the same after this.

I've Become So Numb- Linkin Park/Jay-Z

In 4 days it will be 9 months. 9'months since this started. 9 months without my son. Today was hard. Most days are hard. Today especially. A million memories flashed in my mind today. It started the cracks. The cracks I feel that run deep in my soul. The cracks that make my eyes water behind the mirror aviators I wear. This hurts. It's a pain that even when it's gone has scarred me so bad I am never in my life going to forget it. I am a bull. A bull that has plowed through days and weeks because I don't have time for the breakdown. I don't have time for the pity party and the emotion because I got shit to do. I got moves to make and even with all that I do there is so much that is not done. I am trying. I am trying so fucking hard. Jason is too. As much as I want to take a knee and sit it out for a while I can't. He is in the middle of this fucking maniacal game and he needs support. He needs back-up. He needs his mom. 

No matter how tired she is.

In Summary

The hospital took 3 weeks to find a bed for Jason. I threatened to go to the media with an expose on Jason's disease and the hospital's lack of interest in treating him.

He got a bed the same day.

Chemo went- almost uneventful. Had a "come to Jesus" with (2) people. Stayed with Jason - left and 27 minutes later he has an episode. security is there explaining to my mother how his items are to be confiscated and he needs to be frisked, stripped and put in a special color gown. 

I probably blew out some eardrums with my tirade on the phone. Needless to say none of that happened. The frustration of ensuring it didn't happen still raises my blood pressure.

Back at the hospital... Jason is moving along. Showing signs of improvement. Not ridiculous like he is ready to go home. But enough to note. 

Jason had an episode when I was on my way there. Cops involved, ambulance ready to transport him. Yea you heard me cops...New nurses, Dr's, and assistants are there. They Don't understand the triggers, don't know what to do... Following protocol stiffly.

I walk in to see Bruce Banner on his bed, tired and crying. Room is a mess. I get him to comply to what they want and take him for a walk. Tell everyone to back down. Talk to my boys in blue, refuse transport, get Jason his meds, feed him and watch him watch television. Rest of the day is uneventful, head home at midnight. I prayed real hard for a calm sleep for Jason and a calm day. He got it. Last night was a good night.

Another person would break down with all this constant trauma. I guess I have that rhino skin. This is just another day in the life.

I'll order my nervous breakdown later w/ a side order of fries.. 

A Lot

A lot has happened... I am not ready to talk about it.

Cytoxin given... Jason a little bit better...

We wait... 

We hurry up and douse his system with poison and we wait...

I hate fucking waiting...

It's the hurry up and wait that made me leave NYPD...

It's the hurry up and wait that messes with me right now...

"Irene, I really commend you. You did not take 

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.

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.

We Made The Team

Nights with Jason have been getting better. By no means are they perfect. But there is less pushing and shoving every night and he is becoming easier to redirect. Last night as I sat across from his bed on the couch working from my laptop in the wee hours of the morning he put on his headphones and listened to music from his phone. Jason is still no where near 100% but having his phone is one of the few things that brings him comfort and helps him feel normal. I could hear Drake blasting in the earphones, but he was quietly listening and seemed soothed by the noise. 

Then he started Karaoke:

"Started from the bottom now we here! Started from the bottom" - he points at me and his aide- "now my whole team's fucking here."

The aide and I looked at each other in amused surprise.

Guess we part of the squad now, huh Jason?

Fatigue Creeps Up On You

It's been days. Days upon days before genuine sleep has cradled me, smoothed back my hair and kissed me at the temple good night. These naps are enough to let the eyeballs wet themselves and the lungs slow down to test its ability to before I am up and at it again. Jason is relentless. Thankfully, he is not completely maniacal as he was. Thankfully he is under some measured form of control right now. I am just praying real real hard that it stays this way while I am away. I have a business trip. One of those you better go to or next year when you are not at the company Christmas party we all know why. I need my job. I actually like my job. I haven't liked where I worked in a long time. I want to do well

Here, and it also pays the bills and takes care of Jason so I have no choice but to remain. I am trying to put together the dream team. Cracking open the rolladex to find people I know willing to stay and endure the crazy overnight. So we don't have episodes. So he calms down and doesn't get upset. I'm shitting bricks. My hair is falling out and my pants are baggy again. The stress is real. Jason needs to cooperate and bare with me. He has to because there is just no other way. 

The Glamorous Life

I get to the hospital usually about 9PM. Jason has usually just fallen asleep. Start his laundry, get the latest from the nurse and his 1-1, talk to Bibi or Christine and settle in. I open my laptop and do some work. Stop when Jason wakes up and tries to leave. I walk over stand by the door, sternly speak to him, have him yell at me and passive/aggressively comply. This dance goes on all night. I sleep in short naps. Never entering REM sleep. His nights have been better. No outbursts. No one getting hurt. He's not completely manageable but better now that I am there. At 5AM I make Jason microwave pancakes, give him yogurt and juice and drive home. Usually I make it in time to see Carmelo leave, sometimes not. Wake the babies. We all shower and dress. Tristan to his bus, I drive Samantha to school. I go to work. Work a full day, between 6-6:30PM I leave and head home. kiss the kids hello, tell them I love them before they are whisked away for a bath and bed. Every night Carmelo wants me to stay home longer. With every passing night I know how tired I am and how bad it is for me to drive later and later. I always decline without explaining why. He always seems annoyed. I leave quickly and make it back to the hospital to start it all over again. Envy me much?for those who have seen how much weight I lost: this is my workout plan. I am 100% committed to it. If you can commit to this you can do it too.

I started giving Jason 8 oz of Acai juice daily through his G-Tube. I am desperate. Well maybe not totally. I was told to rub an egg on his head and I refused. But I am going holistic in an effort to help

Him. Omega3 Fish oil and Acai. I will let you know how it goes. I have a few other holistic gems to try.

Patient Care Coordination

Again, I will preface this by taking responsibility. I slacked. I got comfortable with a plan and I forgot that this disease is a beast constantly looking for an "IN". Like wolverine Jason seems to heal and adapt and without direction, the disease will take him the way it wants him to go. Jason is in a phase called "emerging". In this stage it's almost like he is two-face from the comics. Part of him remembers the past and a part of him doesn't care. The ID, EgO and SuperEgo of Jason are mashed up into this crazed grotesque psyche. For as long as there is encephalitis we have to endure this phase. There is no real time frame. It won't be forever. It could be a day, a week, another month. Sadly we just do not know.

I have taken to conditioning Jason. Very much like Pavlov's dog. Jason is crazy over gushers. He loves them and has eaten the whole box in a sitting. They are now used as rewards for good behaviors. 

Get into your bed and allow the administering of medicine=get a pack of gushers. 

Take a shower and don't pull your tube=get a gusher.

It works!!! 

I could breakdown and cry like a little fucking girl about the insane psychological war games I have to play. How my untrained ass has to come in and brainstorm, and pull from every well of knowledge I have to devise plans that will work for Jason. I have no idea what I am doing but with Jason as my test subject, I want to post what works. My pain may be useful one day to another ANMDARE family. Maybe these techniques and tips will help you reach your milestones and breakthroughs faster than Jason. Maybe it will give you hope.

I could really breakdown and cry over this shit.

But ain't nobody got time for that. 

3:33 33AM

I rolled my eyes and the above is what time it was. Jason was sending me to hell and giving me the middle finger. He "has to go to class" and screams and raises his hands as if he will hit me, and curses at me. I don't flinch, I wish a muthafucka would, and I grab him and throw his ass back on the bed.

Like the exorcist again. He goes from Linda Blair on ten to a little boy. Sobbing softly because he doesn't understand why I pushed him into the bed. I didn't do it hard. I would never hurt him. But I have no choice. The pattern is the overnight gap in meds is when his body starts to follow a routine. A routine of getting up, getting ready and having to leave. The problem is in his confusion he wants to actually leave, down the elevator and out the hospital and we can't have that. So I stop him. If I have to get physical I will. Usually a stern redirection, a threat of taking his phone works. Sometimes I have to grab his hands as they try to smack or hit or straddle his knees to stop the kicking. The new med takes a minute to work. A minute being 3 weeks. I don't know if this behavior has that long here.

I know what is coming. It is the inevitable and it kills me in more ways than you could ever know. 

Jason's father Abandoned him. He never was a part of his life and was blatant about it. He has a child older than Jason and a child younger and he has been in both their lives. But Jason was never afforded a thought.

When Jason was 2 and had pneumonia I called him to tell him how bad it was. His response: Why are you calling me?

At his daughter's Sweet 16 the photographer got them all in a picture. Jason off to the side a few feet away while his arms are around his other kids. He never even spoke to Jason that night or introduced him to his little brother.

Now with 3 near misses with the god of death and his biological is still a no show. Uncaring, unmoving. 

When Jason was a little boy, old enough to understand what true abandonment was he would always tell me:

"Mommy, when I have kids I will never be like Conrad. I will love all of my kids."

"Mommy when I have kids I am going to hug them like you so they know I love them."

It broke my heart to hear him say that. It broke my heart that a piece of shit like his father was able to even have kids when so many I know want and struggle to do so.

I know that Jason would be a great dad some day. He had a fine example in his stepfather. His want to give his kids everything his biological father didn't give him is strong. 

With this next round of treatment I am going to take that ability and privilege away from Jason. 

Although all signs point to me having no other choice...

...I will never forgive myself.

A Mad Man Sees What He Sees

"Can I get an extension on my project? Please?"

"Shut up!shut-UP!!!!"

"Miss can I please get an extension?"

He is looking past me and asking the question. There is no one there. As his eyes seemed glazed over, I know he doesn't know that.

You don't know how heartbreaking it is to watch him suffer like this. In his swollen head there is all this activity. All these conversations and cinematography and he is reacting to it. But none of it is real. 

As the swelling subsides the hallucinations will stop. 

My kingdom for the encephalitis to go away.

I am trying so hard for him. Nobody knows how much I suffer. I would give my life for his betterment but the choice is not mine. I pray, kneeling on the stained couch in his room, hoping for him to get better. Hoping he returns to logic and begins to understand. Begging that he does nothing wrong or bad. It's trying to control a faceless, formless thing that has invaded him that is beyond reason or logic. This disease wants my son badly. But it can't have him. I won't let it. If I have to take 20 minute naps at night for the rest of my life I will. I'll do anything. I just need him better. Please #pray4Jason

Oh Coffer Maker, How Does Thou Offend

I deliberately never post the name of the facility Jason is in. Some close people know it. Others well versed in the medical  field have guessed with hints I have dropped. But I never have.

This place is a medical smurf village. Everyone is happy and does a great job. The children are well cared for. They try real hard to make this place happy for the kids. That's the goal here, to take care of the sick kids.

But most of them are a packaged deal. They come with strings called parents and family who spend sleepless nights and agonizing days here. A cafeteria that is barely open and limited on food choices and coffee machines that leave so much to desire that you would rather warm toilet water than drink it.

The food inconvenience is a constant reminder of where you are. It makes you even more miserable because you are hungry and tired and sick of the fucking place you have no choice but to remain at. You can attempt to hunt and gather for food but honestly in this environment you blink and a 12 hr shift has changed and you realize you are starving.

The places to order from suck and each meal is about $20 with delivery. Yet the administration here has a "protocol" no coffee makers, no mini fridge. The refrigerators on site are for the sick kids and rightfully so. Essentially parents: "fuck you if your hungry."

Sometimes on my worse Jason day. The little nostalgic points I brought along with me were my saving Grace. The one thing that kept me from losing my shit here was making a hot cup of Bustelo coffee. Being able to close my eyes with it under my nose gave me a sense of calm, even if just for a minute. It was a proverbial rub on back that this was going to be ok. My favorite creamer is bougie. It's not coffee-mate they don't have it downstairs. Keeping a little stash of it To splash into my coffee brings me the slightest comfort that in this situation I need. 

I miss my kids. Especially the one who lays in a bed here. The monster this disease makes him is not my boy. I miss my daughter who is going to turn 6 next month and I feel like I barely know anymore.

I miss my baby boy who seems to be so much more older and mature everytime I see him.

I miss my husband and all the plans we had for this life before this disease robbed us of time together.

I miss my life. I miss the life I built and wanted to continue to build. When the administrators here who implement these rules go home to their lives and families and sleep in their bed for a second I want them to think of me. Not Jason. ME. Think about the comforts you take for granted and think about how many your rules if strictly followed would afford me. A mom who helplessly watches as her son battles this incredibly horrific disease. A mom that is trying to do everything I can to fight the disease with him. A mom that is only human.

I am thankful to every human being I encounter here. Everyone who brings me cold pizza, looks the other way at my coffee maker. And have allowed my mini fridge which is now only stocked with things Jason likes in an effort to give him an appetite. At this point it isn't even for me, so I would fight tooth and nail for it anyway.

But my coffee maker. My community coffee maker that I would offer to any parent in need. The one that gave me fuel on my worse Jason day. How could you try to smite down my coffeemaker?

Dear Administration: Please know that I am human too.