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.