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.

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.

This Is My Boy

This is my beautiful selfless boy. A boy who can barely speak, who still has a shuffle in his walk, and whose brain is still Enflamed. This is my boy who is confined to a hospital until he gets better.

This is my boy who heard a fellow patient crying in the hallway. A little girl with more problems than himself who was upset and wailing loudly.

This is my boy who left his room and knelt down on his still unsteady feet to ask this little girl what was wrong.

This is my boy who consoled her until

She stopped crying.

This is my boy who bought a floor of nurses and nurses aides to tears at his selflessness. 

Sick and with his own problems to face this is the man my son is. Stopping to care for someone in need when he has so little to offer.

This is my blessing. This is my boy.

Until...

The medication he gets is stronger. So he doesn't punch and kick and get as upset as he once did. The delusions are still there. He talks animatedly about cars he has never owned and jobs he has never had. He should be a straight A student with how worried he is about school. To have him back to how he once was I will take those skin of the teeth B's he once gave me. Sometimes for a second he gives you a taste of who he is. The smart mouth Jason who notices things you wish he didn't. These moments make me happy because I know Jason is in there and he is coming out. I just need to keep on keeping on with the patience of a saint. I'm still the person who annoys him most in life. I would get upset about that in another time, another life, now I relish in that information. No more is he almost in a coma, almost a vegetable. He is awake enough to have an opinion. Even if for the moment it is against me, his biggest fan, I will take it and I will grin ear to ear about it.

He is eating. Not as much as he did pre-this insane life- but enough that it counts. Cereal, strawberries-soft food. Grandma's lemon cake-and pizza. 

He is walking. Not his usual gait. A more subdued one but the steps are there. Unassisted. He is trying. He gets up everyday and doesn't stop and that's why I continue too.

When I look back at how much has happened, the nervous breakdown I so desperately deserve starts to rattle in its cage begging to be let out and I try to calm it and tell it to wait. The PTSD is there. I feel it. How I function through it? I don't know. Or maybe what I am feeling is something completely different. Crazy people don't know their crazy right? How the fuck am I scheduling my nervous breakdown??

I don't know. I don't know much of anything anymore. 

Free Writing: The Expenses

I once took a writing class and we had this thing called free writing. Where you had to keep your pen to the paper for 5 minutes and write whatever came to mind. This post is a testament to that:

The expenses creep up on you. When you don't lie on your Medicaid application and have a loser sperm donor who does not communicate or help the government tells you "No, you are not poor enough for us to help. Go figure it out." E-z Pass costs money, so does food when you are out all day and feel dizzy from not eating and have to buy takeout. Wear and tear on the car ain't free and clothes last but so many times being doused in vitamin laden piss and shit before you have to buy them anew. You don't get bonus pay checks for this stuff. The money collected so far has been spread over the 20% in doctor bills insurance does not pay for. And I am still paying for.

Jason is "emerging" this means he wakes up everyday and does something slightly more characteristically himself or even civil. He walked yesterday. Without his wheelchair being dragged behind him. Without a walker being held in front of him. Just a simple slightly shuffled gait where as he puts it his, "Achilles tendon is killing him." He asked for food. He wants to eat. His bottom jaw still damaged from negligent care at Columbia. He is not well enough to have his teeth fixed, so we have to wade through this part and try an accommodate where we can.

I had to buy him groceries. At this stage in the game he is waking up and hospital food is well hospital food. We have to determine if he really has no appetite or if he just really hates the food. It's strange going shopping for two distinct households. When it was just Jason and I shopping was always a pain. No company makes single serve food. I take that statement back. Of The Foods I Like, No company makes single serve food. I have to buy a box of everything or multiple portion. Jason gets sick of things easily. Well, he used to. I don't think he will eat an entire box of POp tarts yet and if he did they would sit around too long anyway. What he likes to eat and the way I feed the little ones is different. The babies were raised on more natural and organic, while Jason was raised by twenty-something me who fed him more crap. Funny organic is expensive but crap food bills seem to be about the same now. Maybe I can use this to change his taste buds, and see if he will convert. 

He slept the whole night last night. First night in forever. Sleep heals the brain. He is being friendly and respectful and not talking madness and being combative. I am grateful for that. I thank God for every  thing he has done. The miracles have been limitless and I have held to the mantra that I will not trust what I see. I can't. If I did I would have abandoned this Odyssey long ago and died of the pain and sorrow of loss. 

My beautiful Jason is not "there" yet but he is closer today than he was 5 months ago. He has shown tremendous improvement and restored faith in so many that nothing is impossible. Sometimes I feel alone, in crowded rooms with dozens of people. I feel alone because what I feel in my heart no one else shares on my level. And in that most intimate place where few people can travel no one can help me shake that feeling. But the loneliness has no choice but to move and make room and somehow dissipate because of so many people who reach out and comment and call and text and just pray. All of you who just ask That things clear up and get better somehow help. You help more than you can ever imagine. We would have never have made it this far without you.

Cats In The Cradle

And the cat's in the cradle and the silver spoon
Little boy blue and the man in the moon
"When you coming home, dad?" "I don't know when
But we'll get together then
You know we'll have a good time then."

Well, he came from college just the other day
So much like a man, I just had to say
"Son, I'm proud of you. Can you sit for a while?"
He shook his head, and he said with a smile
"What I'd really like, dad, is to borrow the car keys
See you later; can I have them please?"

And the cat's in the cradle and the silver spoon
Little boy blue and the man in the moon
"When you coming home, son?" "I don't know when
But we'll get together then, dad
You know we'll have a good time then."

-Cats in the Cradle

I went straight home yesterday from work. 24 hrs without seeing Jason. I called and face timed and made sure he was okay. Driving nurses crazy and walking to the elevator without assistance because he "has to go".

I took a minute to go home and shower my little babies with kisses and hugs and show them how much I miss and love them. They both gave me a typical hello hug and kiss when I came in. After getting settled I went for more. Tristan was playing with his toy train. I asked my curly haired cherub for besitos. He put up his hand and did not look at me, "you gotta wait." He said unmoved by my pleading look. I had to blink back my smile and gave him a look of surprise. 

I sat over at the kids plastic table and my 5 year old princess walked over. One hand on her hip, her head cocked to the side and her other hand using a finger to point downward.

"Um, mommy, I was sitting there. Don't you see I am coloring there?, she asked me matter of factly.

Again, my look of surprise and a smile curled the corners of my mouth, wrinkling the cut left there from Jason's nails and hurting me a little bit.

"Oh, so I guess I am nobody anymore. I just pay the rent?"

Tristan, not looking up from his train set, "yea mommy, you pay rent and be quiet."

Buffalo Wings & Fries

"...Where no one feels anyone else's pain, Sleep like a baby tonight, in your dreams everything is alright, tomorrow dawns like its suicide, but you gonna sleep like a baby tonight..." -U2 Songs of Innocence

What a difference a day makes? Last night I was exhausted. When the ambulance came to pick up Jason from Columbia, I felt like Charlie Sheen at the end of Platoon when the chopper pulled away. I was battered and fucked up. I wanted out and didn't have the energy to rejoice. It was a bittersweet victory. Taking my son back to his rehab and feeling a sense of relief that he is there. He slept the whole way and even at the hospital. I straightened up his room and kissed him goodbye. Then took a cab back home without him. I never get used to that part. The panic attacks stopped. They were really bad when he was at Columbia, I don't know how Carmelo put up with me then. Now the sadness is just heavy because Jason is no where near ready for home. My chest aches. Sometimes it feels hollow, sometimes it feels heavy, sometimes it just actually hurts. (Insert calls to see a cardiologist here, yea I know. I'll schedule that with my much deserved nervous breakdown). When I got home I showered, kissed my babies and tried to eat for the first time all day. I was too scared to leave him on our last day so I didn't get food. Too afraid that red and black demon from insidious was hovering over his bed waiting to pounce and snatch out his G tube or let some crazy unexplainable shit happen that would only happen in the storyline of my life. So I didn't move. I stayed centurion the entire day and worried about the dust my kidneys cough out when I try to pee or the hollowed out area where my stomach once was at a later time. It worked. We made it. I was glad and sad. We tested him and he is not having seizures. I did what they said works-4rounds of chemo. Even if I had to pin him down for the last hour and pray to God to let this wave of illness pass and let us finish. It worked. He made it. Now we wait. We wait and see what happens because this is the medicine. This is what we do. Today Jason was calm, cooperative. He pulled out his Maldita GTube but he was not combative when it was time to put it back in. He ate with the therapist today and asked for an order of Buffalo wings and fries. He told the nurse to charge it to his debit card. Yesterday my diseased ravage son savagely tried to beat the shit out of me for 10 minutes as I held him down to get chemo therapy. Today the medicine I helped force into him is giving me my son, my real son, back.

What a fucking difference a day motherfucking makes.

My Favorite Neurologist

Dr. David Robinson is my favorite Neurologist. He is smart, aggressive with treatment and is very analytical. He pays a lot of attention which I find a lot of doctors claim to do but don't. If you need a great neurologist you need to look up Dr Robinson.

No Man's Land

I do my own vitals and pretty often. Daily at least. It surprises me that my blood pressure remains normal. My heart rate can race after fighting with Jason but that is normal I guess. We have been here since Saturday. Saturday the ambulance picked him up with no courtesy call that they were on their way, and I lost it. I wanted to crucify the rehab and to crucify the hospital. I'm used to a particular way of handling at the rehab. It's a community based atmosphere and this disease has created such a manic paranoia in me that I have to be in control of every moment of Jason's care less I lose it- big time. M

Linda Blair Jason's Alter Ego

It's the 2nd week of this bullshit and sick and tired needs a new scenario. I'm sick in every way you can imagine. I am tired. I am so tired. You just don't know how tired I am. Jason is big. As in had a growth spurt apparently. Fighting with him is like fighting with a savage grown man. And I have no choice but to fight with him. They give him enough sedatives to take down a moose and he still has enough fight in him to grab me by my face and slash me Freddy Krueger Style. My face is fucked up again. His BP was too low to get another PRN and he decided to go savage when we were in the middle Of his chemo infusion. If it were Stopped we would miss our ride back to rehab. I can't miss that but today-So I decide to sacrifice myself.

I get kicked and punched and cursed out. And I know it is not him, so no matter how hard he comes at me I hold back on him. He calls me names that our not my own and is always thinking I am fighting him. I never lash out. I never hit him back. I am always on defense. Today, after  another 48 hrs of raw uncensored Jason in less than 7 days it hurt. When I saw myself in the mirror where he got me yet again on my face and I looked at the bruises all over my arms and hands I cried. I cried hard because I don't know how much longer I can do this. I would never forgive myself if I let them dope him with more meds after everything they told me. And today's fight was for a good reason. I could see the promise land! It was 1 hr away from complete infusion and Jason wanted to pick 59 minutes from the end of this nightmare to go postal. I had to pin him down and wear him out and let him get past his spell without anymore meds because his blood pressure was just on the border of not being able to take it. I can't do another day with him. I love him to death, I know I do but if we were stuck here another night I would not be able to stay. Physically, emotionally and mentally I am fried. I have been fried before but this is black and ashened. I need a break. It's funny because you have to gauge Jason to see how to treat him. He was savagely trying to beat his mother 10'minutes ago. Ten minutes later he flutters those fake looking eyelashes and looks at me completely oblivious to the animal he was just being. The NMDARE retreating for all of 2 minutes. Calmly, and in his own voice he says, "Mom, you know I love you right?" 

I look at him. Part of me wanting to beat him for 10

Minutes ago and the other part amazed at how innocent and oblivious his pattern of speech is. I see the expression in his eyes and realize this is what i fight the disease for. This is my boy. I answer genuinely, "I know you do Jason."

"I do with all of my heart mom." He said before turning over and falling into a deep sleep. God always gives us what we need. He knows I needed that today.