The Night's Watch

I woke up several times last night. Apparently I have acquired the instincts of a cat. Jason coughs, flinches, turns over in bed and my spine snaps up and I am in a mode ready to take him down if I have to. I slept across from him on the battered sofa that is an alleged pullout bed,(I have never had the luxury of using in such a capacity.) Wonder Woman sneakers laced and kept on all night "red to go" should the exorcist pay a visit tonight.

She didn't. All was well.

The nurses and aides were happy.

Jason stayed in his room and was calm.

My phone stopped working yesterday. The one I paid too much money for only 2 years ago and I refuse to pay for again. I'm about to tincan it for a while in protest. I refuse to drop another couple of hundred dollars on a phone. I refuse.

My little ones are sick. So is my mom.

I don't have any more people to dispatch or money to pay anyone else while Carmelo and I keep our family from imploding by going to work.

You know how guilty it feels just to try to do the right thing? Like seriously can I get cut some fucking slack here universe?? Was I really a fucking karmic demon in a past life?

Today's post was brought to you by the letters "W", "T" and "F"

But For Fate We The Fortunate and The Unfortunate May Have Been EachOther." -Bill Clinton

The difference a day makes.

This past weekend I made Bibi a bagel with cream cheese. Today she got me one. The heartbroken fatigued parents squad that take care of each other here in full effect.

There was a day that Jason was home and he played video games and watched Netflix. There was a day he got dressed up and went out. There was a day I slept in my own bed secure in the knowledge that all my kids were healthy, safe and sound asleep in their own beds.

Every day before I open my eyes, religiously, I whisper to God to allow me to wake up back in one of those days. 

But I don't. Those days are long gone, and I don't know when they will comeback again. 

Jason was maniacal last night. The encephalitis running through him like a puppeteer. Creating behaviors that are just not Jason. He's 5'10 and 140lbs and acting psychotic because his brain is swollen. It doesn't excuse the behaviors it is just the reason. What he does is hard to forget, accept and look past sometimes. I know because I am his mother and I live through them all.

I am moving back into his hospital to police him. I am packing my clothes and breaking night from now on to make sure there is no crazy night like last night. Where other families had added upset put upon them as they cared for their sick children. It's my fault. I skipped a few daily meetings. I have been busy trying to reassemble my life and in my mind I thought no news was good news.it wasn't. It never is.

When I am there he is better. Because I don't fear Jason. I am his mom. It's a hard job but I am still his mom no matter what. I'm mom to this split, sick psychotic Jason and love him just as much as my Jason. I pray this medication works. I pray that a week of figuring out my way to work from the hospital and back everyday doesn't drain my pockets dry and works out in thee grand scheme of his illness.

At this point that is all I have. All I have is that I can pray. I can pray real real hard that this shit finally goes my way.

Right now in this minute, I am just not okay.

The Glint of A Sword

It started. The mania, the outbursts, the crazy. Jason has pulled a wolverine on his meds and he adapts. The strong sauce that subdued him a week ago and would knock out the average cow has the same effect as watered down coffee on him. It isn't working. I got the call from the team, with "the suggestion"

Cytoxin.

He just ended his 4 rounds of retuxamab and now we need to move on to being aggressive. My arsenal is limited but if you reach back in the crates there is another trick I can use before going at Jason with an Atom Bomb and hoping he survives unscathed.

I asked for a test to see his levels. So did his new Nuerologist. The team thinks we shouldn't wait. A test takes 7-10 days and his outbursts might not allow us to wait that long. We should move now injections blazing and douse him with the hardest we have.

He will lose his hair.

He will probably have bouts of throwing up and nausea.

He will become sterile and never have children.

I posed the question, "would you give it to your child like this without testing first?"

"I know this is a very difficult decision...."

Was the response.

I guess that meant no.

Dear Jason,

I don't ever want you to know my side of this. I don't ever want you to know what this part of your disease feels like. The part where I have to talk to doctors and fight and argue about your treatment plans. The part where I go to work wishing every minute I could be with you because I am afraid of what is going on when I am not there. I am terrified every day that this disease will cause you to do something to get kicked out of this hospital and put in a more adult facility under the premise of it "being for your own good". That would devastate me and our family because then for sure I won't be able to work anymore.

I have to choose between poison number 1 and poison number 2 and I don't want to give you either. I argue with the doctors that don't want to give me a choice and try to choose for me. In the end when this is all over I am going to have to sit you down and explain. Explain why life may or may not be different for you indefinitely. I welcome and dread that conversation. If we have this conversation it means your better. If we have this conversation I will have to explain all my decisions. If any of them scar you for life I will never forgive myself. That is what all these drugs can do.

I don't wear make up anymore because I cry so much it is obvious when I wipe it off. I just pretend I woke up late or forgot to appease everyone who thinks "I'm so pretty".

This pain I carry, the anxiety of what will happen to you and us and when and how. It's killing me. I can feel years of my life ball themselves up and fly away. I don't want you to ever know what i go thru. You have your own problems right now. To really know my side would be too much.

This disease got me. It has me by the throat, the heart, the stomach and the spine and it clenches hard with sharp talons. I can't breathe Jason. I really just can't breathe.

Rough Times

Last night and today were rough times for Jason. Yesterday he was playing but with his brother and sister. Last night he was Hulk Jason being maniacal. He is easily agitated and needs to be medicated-constantly. I am asking you all To pray for him. To pray dearly that his mind settles and calms. That the medications he is given do not cause any adverse or long lasting effects. To pray hard that Jason is able to come back from This with no more damage sustained to his body and his mind. I try my best not to ask for anything. But I have to ask. The chorus of prayers work the best. We need them to bring calm

To this moment please?

Legos and Kisses

This disease is a pain in the ass. Jason is coming along. He has moments where you can actually talk to him. He wants Legos sets and spends nice amounts of time patiently putting them together. He wants to pick up, hug and kiss his little brother and sister.

Then when Bruce Banner Jason is tired of playing nice the Medically subdued Hulk shows off. Then he goes off on tangents and has moments that he really doesn't understand. You almost think he is faking. You almost want to stay stuck in the moment where he seems to be acting like the biggest asshole and flip the fuck out on him. But then he changes and you stand there dumbfounded wondering how the same kid who just called me a "bitch" has tha audacity not to flinch and ask me if I can buy him a pair of sneakers. It's the effect of the disease. While Jason is coming out of this, and will come out of this 100% the psychosis is the last to go. His brain is swollen. A swollen brains presses On all sorts of areas on the brain depending where the swelling is. For Jason he shows aggression sometimes and he talks fantastical. In his mind we are still

In October and for him that is a blessing and a curse. He doesn't remember the illness. He doesn't remember the near misses with death or the insane days and nights that I lived. I am grateful for that. He also does not accept that we are in April. In his mind it is the day after he got sick. His brain not clear enough to process too much passed that. I thought it might be and I allowed Him to have his cellphone. Unfortunately, that did not go over too well. For those of you he contacted and didn't make sense, forgive him he honestly doesn't know what he is doing. He is trying to function normally but he is still in the back end of throes of the disease. 

For the rest, visitation can begin as he tolerates. No one sick or recovering from

Illness as Jason is currently immune surpressed. Reach out to me for details on visitation if you're interested.

No One Properly Plans For This

When we got here Renee was ambassador. coaxing me out of my anxiety riddled shell. She was Emilie's mom and she was a few doors down and neighborly. I was shell shocked for sure, having my son tell The God of Death, "not today" no less than three times by then. Renee and keekee and Jeremy talked to me, on days when I sat vigil at his bedside Renee bought me food. I remember the first meal she passed that I ate. I remember being so grateful for it. Thinking for the first time that without her, I would not have eaten that day. It was late, ordering places are limited and money holds you back too. We the parents suffer. We suffer so much. And the hospitals are there for the kids. But there is an ill equipped minority that becomes the casualty of this situation and it is the parents. I am ambassador now. Being one of the families at the hospital the longest, I try to give back any way I can. sometimes it means smiling and faking a good mood when I don't want to. Giving random hugs to strangers coming out of a child's room in tears. Offering coffee from my personal coffee maker if and when I can. This anxiety, this angst - it is hard. You need people. While every room has a child with a story that is different from the next it is always the same: a sadness centered around children. We try our best to be there for them. An army of parents who love our kids and find it so hard to let them go. The married ones who struggle not to tear apart their marriage and remain strong. The broken couples who grow closer through this tragedy. The single ones who do it on their own. Giving up jobs and livelihoods because the mental strain of all this doesn't allow you to function. The hospital is for the kids and as a courtesy the cafeteria is open once or twice a day but it's not open all the time. Weekends it's fully closed. Food is limited so you scavenge ordering from the nearest places until your money runs out. You don't get paid staying in the hospital watching your kid. Kids grow and need things and how can you supply them?. These are the forgotten. The people who are not thought about. The story that is within the medical story. The people who will see a donated gift on Xmas from some generous soul when all year long they could have used the generosity of a hot meal, or a cup of coffee. You will be surprised how Something so little can bring comfort during the worst times. A pie of pizza delivered to the unit does wonders to lift the spirits of everyone. I know. I have done it. I have been blessed. In so many ways by so many people. I give back when I can and I thank God and you all for easing my burden at points when it was too much to bare. I and Jason have been blessed with love. I hope you all know how truly grateful I am.