Nostalgic

The things that set me off are crazy sometimes. The scent of Axe. The person behind me online at the pizzeria murmuring about Buffalo Wings. Today it was Gatorade. I passed the Gatorade aisle in Bj's and the fact that I haven't purchased a case for Jason in 3 months hit me like a punch in the chest. I needed a moment to hold on to a skid and cry because my heart hurt. The angina that starts when I think of Jason is anxiety. My own personal conversion disorder. My emotions manifesting themselves into physical ailments.

He threw up yesterday. A combination of eating too soon after being touched too much and coughing too hard. I was there for the event and As usual I am the only one who reaches in to grab him and throw him forward hoping it doesn't go down the wrong pipe. I get it all over me, but I don't care about that. My son's well being means too much to me to care. It spouted out of his trach like a faucet anyway. Even though I was there and I tried, it still happened.

Telling me it's not my fault does not make me feel like less of a piece of shit. 

Now the wait begins. The wait to see if this causes added complication. The wait to see if a third pneumonia brews. 

I drove home smelling like vomit. Tryng to do the errand necessary to keep the rest of my life afloat. My daughter can't return to school unless her immunizations are up to date and apparently she was missing two. For the life of me I could not figure out how. I meticulously took care of my children before this. She was due for nothing until

Her birthday. But this current life has made me crazy so I don't know what I can trust myself with being firm about anymore. An entire day spent getting to the doctor to find I was right, school was wrong. My anxiety about some school aides apparent mistake subsiding to make room for more anxiety over Jason. I promised my step kids things, and loving them as I do a part of me felt guilty for not following through. I took them shopping and called every hour to hear that Jason was doing so much better and that I shouldn't worry. 

How can you ask me not to do my job? A mother worries about her kids. That's what we do.

He slept through the night without incident since the vomiting.

That is all I can ask for right now.

Slow Down...

Yesy helped me start the coffee; in the coffee maker I moved in here the day I thought I would dorm here for 2 weeks over the holidays. Bustelo coffee wafts passed his room air circulating vent. I 

Hope it does something for him. Awakening some memory, evoking some cognition that will bring him

Back sooner than later. It might have but we won't know for sure just yet. 

Yesy and I talked and watched. trying to not agitate him, as he seemed to become more and more restless. Sipping Bustelo like old Spanish ladies back in the day eating cheese and crackers. But we are a little more Uppity. Not using Cheez whiz like our fore-mothers but carving from a block of Brie with Pita Crackers.

Peaceful always comes to mind when you see this place. Tranquility and Zen usher you into the perfect place for rehabilitation.

But then maybe I rushed it.

For the first time since getting here Jason needed a PRN. This is basically a dose of sedating medicine that is given "as needed". I can't help but feel Responsible. I was there with Sammi and Yesy and I put on the TV for him and played that crap Drake music for him and talked maybe too loudly and I interrupted his ZEN. 

That could be the reason but unfortunately will never know. The problem with this condition is that it is very temperamental. One day it might not like the color of my shirt and the next day it might not like the tone of my voice. so we have to tread softly around everything that could be a trigger and try to see if anything is constant. While doing this you have to try not to get your feelings hurt. Some days are definitely better than others. 

Jason is starting to fall into steady sleep patterns. He sleeps for a couple of hours consecutively, which excites and terrifies the shit out of me and the doctors. If you hit your head you should be woken up every few hours to make sure you are coherent. How can we effectively check incoherent Jason?

So we watch him close his eyes and pray that he is only resting and keep an eagle eye on his vitals. 

54 anxiety lbs dropped and counting.

The Apparent Doppleganger of Maximus Decimus Meridius

"You have an obligation to them. You can't just stop writing. You started it and you have to finish it." Carmelo said it matter-of-factly.
No sugar coating. That is usually the start of many of our arguments. I need an inflection of sweetness to stop me from feeling offended. As a man, he doesn't usually get that. He is a Virgo who leans more toward Libra-like Jason; everything needs to remain balanced and fair.


I just stared ahead - watching the sleet and rain hit the windshield and get swiped away quickly by the wipers on the maniacal setting. Cubby and whatever that other girl's name is were talking about Justin Beiber on the radio and I was sitting there sensitive to Carmelo's words trying to drown them out by paying attention to anything else. I heard him. And I know. And I wanted to tell him why I haven't written on the blog - but the words got in the way. They lined up in front of my emotions and like a Black Friday Sale they just smashed and jumbled and cascaded through each other to the point where they couldn't come and so I just cried. I cried so much I could barely see and I just focused on the fact that the RFK is a straight bridge and if I just pay attention to 10 and 2 I wont kill us both. The words are locked up. I finally understand what Jason meant. They are in my head, running around and chasing each other and tumbling over each other but they won't come to my lips or drop from my fingertips. I know I have obligations - but I can't force what doesn't want to come. Everyone with their healthy kids, and their normal lives and their curiosity and genuine concern, like me, has to wait - and know that something will come - eventually, you just have to be patient.


Jason has made progress. So much so that the doctors are happy and the therapist speak to me enthusiastically and in very hurried tones. Their eyes bright with promise and their voices gleefully expressive as they explained what they expected and what he has surpassed. Although they are so excited - I am selfish. What excites them - excited me when Jason was months old. To muster up the enthusiasm to be excited again 18 years later is difficult for me. And I am afraid. I am afraid to say that out loud because I don't want God to hear that and snatch back what he has healed because I am being ungrateful. I am so very grateful. But I am also selfish - I want more. I want dialogue, I want full coherency - I want the boy I raised the last 18 years.


I go everyday. No longer with the luxury to live there with him where he is. It kills me. Slowly every day a piece of me dies that won't come back and that is one of the ways this whole situation will leave me in the end. Forever changed and never the same. The worry chips away at me with the crackle of lead paint chips. Every day I fight with myself and time concerned for what happens if someone misses something? What happens if something I could of picked up on but haven't because I am not there makes all the difference in the world?  I'm a pretty seasoned gladiator apparently - because I am called to arms for other things even in this time of crisis. I have obligations, and situations and my real life came barreling at me like a freight train. There are utilities to pay, and other kids with medical needs, and baby mama drama to deal with. There are bi-polar grandparents and hoarding grandmothers and ailments that need attention as well. 


"You have to find balance, and you have to take care of you." Dr. Silverman said, as kindly as she could, meaning every word. I heard her. Like I heard Carmelo. I just can't listen.


The essence of "me" is laying in a hospital bed, making progress in therapy that everyone is willing to slow time for and accept in a slow pace while this shell of a person I have become is being forced to function in real time. How do you find that balance and MEAN it? I faked it. I went through my script of sedatives like M&M's and now I am au natural again and I can't "fake it" anymore. Now everyone anticipates that I function. Normally. Getting over what has already happened and accepting what is to come. Now I have to put on my armor and do what everyone has known me to do best. I have to keep on keeping on because that is what I do.


I wonder if it is somehow like Gladiator. If God gives me a number of tools and watches what I do with them. Feeling pride when I succeed, amusement in some of the ways I go about things and disappointment when I fail. I wonder if the testing is done, or if I am still gearing up for some huge final. I don't like thinking that much. I don't like imagining my life is playing out in a huge arena for eyes to watch and judge - but in a way through this blog that is exactly what is happening.


Maybe in a small way - this is sort of like gladiator? Where I have had all these little battles and victories to season me and keep me agile. I have shown I am an amazingly convincing Commander under crisis. I am the General you want on the battlefield as now I am sought out for medical advice. I'm not done yet. I know that. I need to put back on my armor - there are apparently even more battles to come.


I feel like Maximus; being forced into battle when all I want to do is go home, and live a simple life with my family.

May Peace Be with You

Of all the unexpected moments of this holiday a gift from my old high school teachers Ms. Valentin and Mr. Mendez was the only one that didn't make me

Cry hysterically or feel so terrible that the kindness of strangers was caring for my family. I read this outloud as soon as I got it and it brought me an overwhelming sense of peace. The kind that calms your nerves and makes your heart a little more still. The kind that lets you sleep into dreamless sleep and awaken without panic that you did something wrong. For the first time in weeks I slept and didn't wake up with my chest tight or in a state of panick. I felt ok. I think it did the same for Jason because yesterday for the first time he rested an entire night without incident. I sincerely thank all of you, for just a little bit your thoughts and prayers pulled off a Xmas miracle: you gave both Jason and I some peace.

The Most Amazing Family

I'm Trying...

Me for the last two days. I am praying real hard for God to just help me get right for all the madness that is unfolding. Please God. Just Please, because I can't.

The First Of Many....

Thank you for wearing the orange bracelet in support of Jason's fight against Anti-NMDA Receptor Encephalitis 

Xmas That Wasn't

I was raised Jehovah's Witness, so every Xmas is and was for Jason. He is all I could

Think of for the last several months. Of all 3 of my kids right now he needs me the most. But that hasn't made the last few holidays any easier. I love the faces of my princess as she is shocked an amazed by lights and costumes on Halloween. I love the way my little guy eats with gusto on Thanksgiving. And I live for Xmas. I live for them

Seeing shiny boxes and being too confused to understand if they should be excited about the shiny paper or the gift. I wait all

Year for that hurried excitement as they see so many gifts their little hands and eyes don't know what to do. I miss the kisses and the dimpled hands giving me hugs and holding my face in gratitude. I miss the talk of Santa and the NORAD Santa tracker checks I started since Samantha was a baby. Carmelo and my sister filled in the gaps and made the ginger bread house and told

The stories, but that is what I wanted to do.

As I sit here in this spacious dark room, an hour away listening to the hum of The ventilator as my constant Xmas carol. Jason is back on it again, setbacks. I watch him And I thank God he is here, still going. I thank God for a Syrian Immigrant's son who made it possible for me to watch quietly on FaceTime as my step kids enjoyed their first Xmas with us. I hold back my tears for not being able to be there for my little boy and little

Girl and try my best to be grateful. But I 

Am Selfish and I want more. I want to hug them and kiss them and love them

In person not through my phone.

This disease is their brother's Xmas present. I could not bare the thought of him

Being alone in a hospital hours away from home on Xmas Morning with no family. 

I tried to split myself in two and give the best of both worlds. I tried to ask my Jehovah's Witness mother if she would stay with him to let me at least spend Xmas morning with the little kids. She said,"no". She wanted to visit friends in Brooklyn, her unmedicated bipolarity rearing its head just in time for Xmas. She is annoyed about when I yelled at her last when Jason almost went into cardiac arrest and now she feels jealousy toward his old

Babysitter who I apparently treat better. I can't. I don't have it. I can't entertain the crazy or try to appease it. I can't pretend it's ok and keep trekking on. She leaves January 4th and I welcome the space of time and years it will take for us to speak again. No animosity, no upset-just it's better this way: there is no strama and no upset like this. Otherwise, there are hurt feelings on the horizon and I am so spent I promise it won't be mine.

My wish is that my kids have a wonderful Xmas and some how the dolls and trucks and games makeup for my absence. My wish is that in my heart I don't feel like such a piece of crap for abandoning my two babies. This is part of the crazy this disease makes you. You hate yourself for what you can't control. I had to be here yesterday. I know that now. An episode happened and that is why my mom said no about staying, Divine Intervention knew Jason needed his mom. He is better now, on the vent and resting. So this is Xmas...

Angels Walk Among Us

In the movie Constantine, they explained the premise of demons and Angels. As a visual they put the white angelic wings behind the individuals who were meant to be the Angels on earth that God had in place to step in at the right time.

I am tapped out. I am drained. Every bit of energy has been dedicated to Jason and I struggle to energize myself for anything else. There is now paperwork and bills and things to take care of and I have to sit down to absorb, understand and filter.

As if on que, here come the Angels. Although I have never asked for them in my prayers for myself. I am typically too engrossed in asking for a hedge of Angels to surround Jason. But God saw my need and he sent another army for me.

My family. My friends. Old colleagues and school class mates, People I have barely spoken to but have some how touched in word or deed have flapped their white wings and done the extraordinary for me and Jason. Heather Bechtold, Nicole Devito, Coach Lou and Team Mom Dawn, Ruth, JOCELYN, Myrta, Laura Taylor-O-Boyle, Mr Magnuski, Enid Agosto, Denise Pichardo, chelsea Greene, Ricardo Dias, Rebecca Rodriguez, Casey Beale, Kay Oh, Neysha Jimenez, Carmen Borley, Christine Fernandez, Benjamin Cardozo High School, Joey Solano, Carolyn and these are really but a few and I am so sorry I have not named you all! 

 

The gestures you all have done that have eased this crazy life of mine have brought me to tears. I have still not shaken the sin of pride because I am embarrassed by all the gifts for my kids. But I am grateful because this year I wanted to skip Xmas. But you and God would not let me. I don't want you to ever know this pain. This immense darkness that swallows you and stomps your heart out with cleats. At moments it has blinded me to the point of incoherency to the world and everything else in it. But you did not need to know it to come to my aid when Even I didn't know I needed it.

From the tattered remains of my heart I thank you for every single gesture, word and deed done on behalf of myself and more importantly Jason. Every single one of you reading this have my undying gratitude for taking the time just to consider my life and that of my son and learn about it, his odyssey and this disease. Jason got a gorgeous plaque from his old high school and a jersey, and a check to help with his medical bills. Others have been posting this page on social media and offered to bring me food on Thanksgiving night and coming to sit with me at 2AM in the hospital the first time Jason almost died. I can't convey the gravity of what those moments meant. You all flapped your white wings at different stages of my grief and I saw it.

Thank you.

We are not out of the woods entirely. Although I pray everyday that we are able to stay on this road and not stray away, but I believe now. I believe with all my heart that there is something larger than myself that is taking care of us and will see things through. I believe Jason will come through and be stronger for it. I believe if I continue to hold on, one day the full message of this will be revealed to me and I will see that this had to be the way. 

Until then I remain ready to tackle what is to come. And I am grateful for the rest and mercy I have been most recently showed. I needed the rest because I know I could not make it much longer.

I thank every single one of you for taking this time to carry me.

Jason Is Living Like Biggie Smalls

The-doctor-said-i-need-about-three-months of-recovery-

but-the-nurses-is-lovin-me-

saying-the-best-part-of-the-day-is-my-half-

feedin-me-breakfast-

and-givin-me-a-sponge-bath - Biggie Smalls/real Ni$$as

I want to take this moment to Thank God. On my hands and knees in worship and praise I want to thank the Lord for the blessing of Jason's rehab hospital. The sense of peace I have had since he entered has been profound. God is always on time. I may not have understood the trials and tribulations I went through to get here but I am grateful that we were brought here. Especially Jason. This is where he belongs.

Jason is coming a long. There is a long road to recovery. But Jason is finally on that road. He is well cared for and has been responding well to treatment. I am decorating his room with all his favorite things, and I am open to help.😊 

Please don't stop the prayers for Jason. Please add thanks for all he has overcome so far. God willing visiting will be soon. I thank you all for your continued love support and help. 

We are going to be crusaders for this disease and one day in my lifetime I hope to find a cure.

Truly,

Irene 

Help Jason Recover

Please send me pictures! Pictures of you and him or memorable moments!!! Pr pictures, hanging out pictures, silly moments-ANYTHING!!!! Please include your name. We have to jog his memory and the doctor said to decorate his new bedroom with everyone he knows! YOU CAN HELP JASON RECOVER FASTER!! Send Pictures to Irenemendoza2013@gmail.com

Thanks!!!!

The Moments That Make You Cry

When my cousin Zahira died in 2001 I had to shop for an outfit for her to be buried in. That was the loneliest moment of my life up until that point. That moment I can't put into words because because there are no words for it. Shopping for a dead loved one and trying to figure out what they would like to be seen in the very last time they are ever seen.

I remember the cashier telling me the specials and the return policy. Rambling on about how I had 7 days with reciept. I wished I had that option. I wished Zahira would have sat up and hated my choices and wanted to come back to the store with me. But by then she was dead, and had been for days. She would take what I got her and like it and I just needed the cashier to shut up.

Today was another moment similar. I went to get Jason's glasses from the joint board. The attendant, who helped me before was telling me about the specials. How I should wait because Jason is due for an eye appt. she didn't think she carried his frames anymore. I kept declining his Dr. Visit without making eye contact. She kept insisting thinking I didn't understand. Then I looked at her. The rivers had been falling out of my eyes and my nose was dangerously close to running and I had to explain why he couldn't come. I had to explain why I really needed his old frames because new frames would not look right on my old Jason. I need my old Jason back with his plastic toy looking frames that are apparently not so cheap. I don't want a new one.

She cried along with me for a few minutes and she told me  her husband died last year and she has no children. This time of year is hard for her. After several tissues She helped me find the last pair of frames identical to Jason's in the bottom of a drawer. I cried and she cried because we found it. I got Jason's glasses to help him come back to my old Jason. The Jason I recognize, the Jason I know is there and can't wait to see. I paid her and thanked her.

Before I left I hugged her and told her how very sorrow I was for her loss. I thanked her for helping me. Tonight when I sit beside Jason and say my nightly prayers I am adding her to the list of people I name. It gets longer everyday, but I don't mind because so many of us need it.

The Road

The cherub look has always been associated with me. Chubby cheeks that made my face lie about my age making people think I am younger than I am without having to open my mouth. My face isn't cherub looking anymore. My body not so big. Lines have replaced the once soft mounds of my cheeks. Grooves have dug into the lines of my jaw. I have aged to show the full extent of my 39 years over the last several weeks. I don't always recognize the person I see in the mirror or the person Carmelo sneakily takes pictures of.  The lines on her face tell a story I know just never actually saw written. Each vein, each line, each wrinkle, crevice and groove have a story to tell about the sleepless nights, the anxiety riddled days and the mind numbing madness this disease gives you. I have seen things I will never unsee and heard things I wish I had never heard. I am force to drone out and function because I am a wife and I am still a mother to two other children. I have responsibility and I have no choice but to function because there is an obligation I must keep to all of my kids not just one. I need Vitamin Sea. I wish I could go on vacation with all my kids completely healthy and jump in the ocean to wash away the nonsense I have been going through. I guess I will one day. One day when the lines are permanent and the anxiety has left a more lasting impression I'll bath my new face and body in sunlight and take the battlescars of anxiety on vacation with me. It will be my trophy for having survived this ordeal with some semblance of my sanity and in one piece. At least, I hope that is how it will be.

The Secret

They mentioned it last week but I told them to stop. I am afraid to hope because this disease sends a band of marauders to kill my dreams as it leaves my lips. Last week I purchased my $235 monthly hospital parking pass and (fought with the snotty cashier who tried to tell me my new purchase was expired because she didn't realize we aren't in January yet), and I took Jason's stuff home preparing for another month at Columbia. The last time they said I would be leaving the hospital something happened, several something's and then I didn't leave. But yesterday at 9AM under a clear blue sky like I asked, Freddy Kreuger left  Jason and I alone for a minute and I got the call that Jason was going to be transported via ambulance from Columbia to Rehab.

I have seen when people leave and it always seemed sad. Even if in reality they were headed to a better place, just seeing people in beds, their eyes peeking through hospital blankets with a swatch of speckled hospital gown looking afraid or disoriented makes you pity them. I didn't want Jason pitied. I dressed him in his own clothes: grey sweatpants, grey shirt and grey beanie. I couldn't let him be marched out the front door in a hospital gown and blanket. I needed everyone who saw him for the 5 seconds he hit the streets to know he is loved, he is cared for and he has a mother. I did not get excited the entire way there because I was waiting for the other shoe to drop. But it didn't. 

In fact, the strangest thing happened. We were both washed over with a sense of calm. When we arrived The ambulance doors were opened and huge green elephants greeted us with the scent of freshly cut grass. The sunlight reflected off the green and on both I and Jason who suddenly closed his eyes and relaxed. There was peace and tranquility here, and it reflected off of everything. The flowers and walkway, all pristinely kept, led to a glass hallway with larger than life nutcrackers saluting us in brightly colored uniforms as we passed them by. 

The hallways are bathed in colors, the children some in wheelchairs were smiling and laughing and giving a sense of life to a place built to deal with so much obstacle that there should be no room for joy-yet there is. It helped me to accept that this was the place for Jason. Home is the only place he should be, but in this case-I am okay with where he is. 

I met my new team and they are an amazing bunch of people. No more white coat scientist in classroom style huddles asking me redundant questions. These are actual people who react and have emotion and who want to give Jason the joy this place seems to project. I speak directly to them, and them to me.

No more nurse practitioners who give sub-par care and attending doctors avoiding to speak to me. (I will deal with them later.)

I left Jason asleep, for the first time in days in his new private bedroom with his new caregivers and I came home for the night. I didn't have a panic attack when I left. I didn't need any meds. Exactly two months tomorrow since this began and Jason is on the road to recovery. Bless the hands of those who care for him. Thank you for their wisdom and patience.

God's got this. In God I trust and I do not fear.

Amen

Happier Times

Jason's birthday at the Aquarium with Titi Nicole.

Bracelets On The Way

These are the tags for the bracelets. I chose the picture, I chose the wording. I broke down and cried seeing a ribbon associated with my son. This is hard. This is so fucking hard.

The Extra

Everyone at home is sick.

Ever saw the episode of Family Guy where they are all vomiting in the livingroom all over each other?

Guess who is the barely healthy adult not affected. ((((Pointing to self))))

Sgt. Murtaugh:

"I'm too tired for this shit."

Elastic Heart

  "Yeah, let's be clear, I'll trust no one...

Well, I've got thick skin and an elastic heart,

But your blade - it might be too sharp

I'm like a rubber band until you pull too hard,

Yeah, I may snap and I move fast

But you won't see me fall apart

'Cause I've got an elastic heart

I've got an elastic heart

Yeah, I've got an elastic heart

And I will stay up through the night

And let's be clear, won't close my eyes

And I know that I can survive

I'll walk through fire to save my life...

And I want it, I want my life so bad

I'm doing everything I can..."-Sia/elastic Heart

My Life. I have always referred to him like that. He is my everything. I didn't know my baby boy would have to endure so much so young in his life. I didn't know my baby boy would be a beacon for a cause. I didn't know my baby boy would be chosen for this. I didn't know...

It's Beginning To Look A Lot Like...

Just Breathe...

...You haunt my dreams
There's nothing to do but believe,

Another day, just believe,
Another day, just breathe
Another day, just believe,
Another day. just breathe.

Just breathe. another day.
Another day, just believe.
Another day.
Im used to it by now.
Im used to it by now.
Just breathe. just believe.
Just breathe. just believe.
Just believe. just breathe.
Just believe.
Another day, just believe.
Another day.
Another day, just believe,
Another day, just breathe,
Another day (I do believe).
Another day(so hard to breathe)
Another day(not so hard to believe)
Another day. another day.

Removing My Predator Mask

There is a scene in Predator, when the alien is about to fight Arnold Schwarzenegger and he stops for a moment and slowly unplugs his mask. Each plug he slowly twists off until finally he holds his masks in his hands to remove it and you see his true face and that part of the movie is the "OH SHIT" moment.

Whenever I am getting upset I always mention that scene. I am short temper, mile long fuse so it usually takes a lot for me to start unplugging my human mask and get ready to present to you that I am actually "one ugly motherfucker."

You don't mess with mines. If you try you gon' learn today.

There will come a day of reckoning, of this I am sure. When? I don't know I am not focused on that part of this odyssey yet. My focus now is recovery. But one day, when my heart isn't in my throat and my mind isn't splintered by anxiety I am going to be able to collect my thoughts and look back at my time at This hospital and clearly notate the good, the bad and the ugly. The good I want to praise and reward if possible, in whatever way I possibly can. The bad I want to have fixed by having conversations with administration and trying my best to make sure my complaint is heard and heard loudly so no family with a loved one suffering with Anti-NMDA Receptor Encephalitis will ever have to endure the mental anguish I have endured because of mistakes, unprepared personnel and negligence. Finally, one day I will sit down with a team of lawyers and address the ugly. The ugly is going to get uglier before it gets better and when the ugly is settled I think it is safe to say no one will ever-never-never-ever do any of it again to ANYBODY, not just families suffering with ANMDARE.

Yesterday I walked into the room and Jason's blood pressure was 78/44. You should not be below 90/60.

His nurse wasn't around, I asked for the doctor to be paged. She didn't come. The nurse covering told me she saw it that low and was monitoring. I asked her if she was absent from class the day they taught BP parameters because I was there 2 months and have been consistently told 90/60 was the limit.

She didn't move her ass. She sat on it. I had to get ugly. I spoke to the charge nurse. I ran it again. It came up better 112/83 but still. 20 minutes passed at a number that is dangerous and in the step down unit of all places and no one checked.  An hour later and at shift change the new nurse informs me that Jason was just bladder scanned and needed to be straight cathed for retaining urine-400cc's. This is a not so comfortable procedure, ask anybody. I asked her, "when?" She said he was scanned 1/2 hr ago. Jason has a private nurse who informed that didn't happen and I had been there at bedside for the last hour. I told her to scan him again. He had 40cc's of urine.

In retaliation for getting her supervisor the previous nurse lied to have Jason be subjected to an uncomfortable procedure. You know I didn't allow it. You know I am not standing for this. You know hell hath no fury.

Please contribute extra to Gofundme if you can. I may need bail money.

1-1

There are good people here and not so great. The good are like angels. These amazing angels that have huge white wings and make you feel safe, cared for and whole. These are people like Rhonda, Dr Robinson, Giselle, Ruth, Alta Gracia, Nikita, Ellease, Mary, Maria, Rosemary, Luis, Renato, Juan, Aleksandre, Helene, Jason, Dr Guitierrez, Jess, Rachel, Alyza,

The Care You Recieve

Like I have said before, there are some people who are great at their jobs and others-not so much. After leaving ICU we are now being handled by the nurse practitioner team. It's a trilogy of them lead by a doctor. Of the 3 I definitely have a favorite and her name is Beth. She is the most personable.

When this started I had a lot of expectations and that's what caused a lot of problems. I thought everyone was like me, common sense, common courtesy, common knowledge but you know what that was a lot to ask for. Different people are raised different ways, have different etiquette and see different ways of "doing their job" as acceptable. I have learned that while I may not agree it is not always necessarily wrong. Then again, there are times when it is just grossly wrong and someone needs to intervene to correct it.

The nurse practitioner handling Jason today is my least favorite. She's the one who sometimes answers important questions I have with "I don't know, I am just covering." That is not acceptable. 

Waiting patiently for the audience I asked for with Andrea Castellanos. I wonder if I let one of the lawyers who have already contacted me through this blog ask the administration for an audience with her would I get one faster? Maybe. 

I am congratulated for being such a great advocate for Jason. But not everybody has a "me" so what happens to those people? It's a scary world we live in. A scary world.

Are You Serious????

keeping track of stats. Wow!! Really? 

Keeping Score

Jason's been intubated 3 x's

Rapid Response team (the you might die people) showed up 3x's

Tried to leave the hospital 3x's

I think the trend seems to be 3 so I am expecting whatever number we are short on the other stuff will need to catch up.

A little Bit

Maybe...

Watching From The Sideline

When you have a child It changes you. It is no longer about you. You forsake yourself for the well being of another person. Food becomes optional, money, clothing. You would set aside your own life to make sure this new person you brought into the world will have no matter what, even if it means you go without. That's a love that is profound. It's amazing really. A love that will have you jeopardize self preservation. 

I always have a problem hearing about bad moms on the news. The kind that hurt their babies or kill them. Don't they feel what I feel? 18 years since I was afraid to hold him and thought he looked like a wet tweety bird and I still love this kid enough to want to put myself aside for him. There is no me without him. He is my life. If you don't understand what that means I can't explain it to you. But hopefully one day when you become a parent you will understand.

"You have to take care of yourself."

"You have to worry about you."

I hear it all the time. But what is there to take care of?

My sense of self lay in a hospital bed, struggling to right himself. My life, my entire purpose for being, my greatest accomplishment this life time lay in bed struggling and there is nothing i can do but sit and watch and try to help. Picking up His legs, cupping my hand and beating his back to pop

Phlegm out of his lungs, clipping His nails and putting Chapstick on his lips. Another woman saw me and asked what agency I am from. I guess Jason and I don't look enough a like. I didn't feel upset about it, it made me sad. I have been there long enough to see people need the TLC I give Jason and not get it. its heartbreaking. I thank God for all the opportunity I have had to be there for him. For giving me a great job that has let me Put my family first, for giving me amazing people who care so much for me and my family that they have done some extraordinary things for us. I am grateful and Thank you.

When it is my time I am going to have to admit this life has been a wild fucking ride. I could write volumes of the crazy and hopefully one day the 3 part memoir will be complete. I hope that one day, when i have to leave here all three of my kids and my two step kids will know how much I loved them. How much I would

Do for them. And I hope I leave them in a good place where they will be able to do for themselves.

I always said I know I will never have to worry about Jason. Jason always took care of himself, he always looks out for number one. He would serve himself

Good and get the biggest piece of meat. He would pick out the best gifts for himself. He would want the nicest clothes and sneakers. He does good for number 1. Today I worry about him every second of every day. His heart rate slowed and held a bit again tonight. I am scared and I worry. 

Yesterday he looked at me, he registered for a bit. I asked if he could see me and he nodded. My baby is on his way back. Hopefully one day very soon, his systems will regulate and this disease can go back to hell

Where it belongs. Then maybe I can go back to where I won't have to worry so much about Jason. Maybe, one day.

Oxygen Saturation

Lesson #2 of Irene's pseudo-nursing school is (say it together class)

Ox-zen-gen-A-shin

Asthmatics have problems with oxygenation. They "de-sat" a lot meaning they don't pull in enough air not to go light headed and fall over. 

Normal range 95-100

Bad ranges below 80

Jason was just 79. 

I leaned him Forward and did chest PT like I did when he was little. 

Chest PT- Cup your hand and beat the crap out of his ribs and upper back. It helps loosen mucus in the lungs.

The nurse went to get albuterol and his 1-1 helped me to get him to sit up straight. He is back up to 96. 

As Sgt Murtaugh would say:

"I'm too old for this shit." 

Wavy

Wavy is Millenial talk. Apparently Jason likes to say it a lot. I can't wait for him to be ok

The Blame Game

It's easier to blame someone. I get it. I had an argument with my mom yesterday and hrs later I see her point of view now and I hope she got mine. Jason could have gone into cardiac arrest in my arms yesterday. That's been mulling around in my head since it happened. I had to leave my mom with him while I ran to BJ's to buy him toiletries and she felt the 1-1 nurse wasn't good enough so she called me to complain. She felt the nurse wasn't being generous with his water so she called me to complain. Then they left a scissor clamp on the makeshift stomach peg Jason got so she called me to complain. This is her coping mechanism. She was there. She saw him get to 201 and her mind was processing it by looking for blame to have an outlet to centralize her anger and fear on.

(Insert Samuel L. Jackson's voice) This is some scary shit-let me be the first mothrrfucker to tell you! 

I am living it I know. But after witnessing what I witnessed I can't do blame. I can't look for fault. I need help. I told her to ask the nurse to cover the scissor clamp. There was a simple way to get around the issue. God forbid he twist or had another storm we could have been in trouble, I get it. But at that moment I was willing to forgive because My energy is too focused on Jason to get angry. Hours earlier I held him in my arms and prayed for his life not to ebb away. There are no words to explain to you that feeling. The gravity of that moment is still with me and I have no idea if it will ever leave.

She was there. 

But what I felt and what she felt were different. She is still looking with anger to find an answer. I can't do that. This is probably the reason we sometime go years without speaking. Or why it took such a tragedy as this to get us to speak again. 

I am trying. I am trying to do the best I can. I once found fault with everyone like she did. There have been mistakes of that I am certain. But I am not of a mind to look for them right now. Unless they can right a situation he is currently in I don't have the energy to actively search them out. After (2) months you get to know people a little better and the science project fiends I once thought they were they may not be so much. That or maybe they beat me down and I am just sipping the Kool Aid now. Now   all the Dr's are invested. He has been there (2) months and now you can't help but know him or cheer for him or hope for him. He is young, and he is fighting and he is trying. I can't be angry anymore. I want to cheer for him to keep on. I have to. I'm his mom.

I Always...

...say Amen twice. I realize that now. When I was a little girl

In the Kingdom Hall the person saying the prayer would say Amen and the congregation would follow. It never occurred to me until today when I did it out loud and someone looked at me that all these years that echo had affected me. Funny the things that linger from your childhood that still affect your adult life. 

There was a storm today. No newscaster could predict it. It's almost like a flash flood. Jason's heart rate jumped to 201 today.

Couple of posts ago I cried because it was too low. I didn't cry today. I was too scared to do that. I know I stopped breathing because I saw the spots. I helped him and I prayed and I said Amen twice. 

The nurse came with seroquil and after an eternity he went down to the 140's...130's... And now he is hanging out in the early 100's.

I haven't recovered from the 28 BPM heart rate, stomach peg falling out, the bronchitis, the urinary tract infection, the blood clot, the pressure ulcer...and I am still emotionally scarred by the pneumonia, staph infection, (3) intubation and the tracheostomy.

One day this will make sense. One day when he is better and I know he is completely out of danger. I am going to have the nervous breakdown I deserve. 

Word

Moments In Love

Supporting Jason

The first batch of bracelets came! They are in Jason's favorite color orange and imprinted with the website. The bracelet is a symbol of a commitment to the improvement of Jason's health and to bring awareness to Anti-NMDA Receptor Encephalitis. With these bracelets I want to show Jason how supported he is, how loved, how many people care for his well being and to bring awareness to a condition I had never heard of until it affected me personally.

Like the "live strong" campaign a sea of orange is my plan for world domination. It gives me something else to think about than just going crazy here watching him.

This is the toddler size band I got for my kids. But there are adult size ones too. If you would like one they are free while supplies last. Upon receipt of your bracelet if you would tweet/Facebook/snapchat/Instagram a photo of you wearing it hash tagging it #pray4Jason it would be greatly appreciated. The virile campaign I think I want to start are photos of supporters holding up their arm and pointing to the wristband and or wearing it with hands clasped in prayer. 

For Bracelet requests Please email your name and address to:

Irenemendoza2013@gmail.com

Be patient I have someone helping me mail it out, and when supplies are gone I will announce.

Thanks.

If I Told You...

You would not believe me. But people who really know me would. This is the shit I talk about. The little unnecessary extra stress that makes people wonder why I have not already fucking died from the shit I endure. But I digress:

Let's recap the last 24 hours: Crisis being managed: I spoke to pulmonary/cardiologist/attending physician and cleared up our misunderstandings. Medications tweaked, extra care taken, considerations made, referrals noted etc. Jason was calm, Jason has been good, no horrible events. Not perfect just not completely horrific.

He is still doing everything on his own. Breathing etc.

We talked. Not him. Me. He listened. He ate his protein and was propped up in bed. I prayed. I prayed on him. Next to him. Even tried to make him mouth words. We lotioned his legs and his hands, and moisturized his lips. He got his meds, and his new nurse Rachel was very attentive and helpful. She appreciated my tips and treated him really nicely, taking extra care even when she didn't really need to.

Friday should be uneventful...

...Jason's stomach Peg just fell out.

*drops the mic and walks off the fucking stage.*

By George

I met with the team today. Dr. Lennihan looked me in the eye and spoke in deliberate tones. She is an older woman, soft spoken and deliberate. Her all white bob swept to the side so the light glinted on her shiny spectacles. We made changes to medicines and things were expressed. I expressed How my poor son coughs all night and day without a break or so much as a cough drop. How long do you think he sits there with his chest on fire and irritated from coughing so Much? I have the same Maldita cold/virus/crap from 2 weeks ago and my chest is on fire all day. I deliberately don't take cough drops or help soothe it as a vigil to what my poor baby feels. I  can only imagine how my poor baby Jason feels? Cardiology is being called and so is pulmonary. Because I advocated for it and now everyone understands. Everyone is on board and gearing up because we want Jason to be better. We opened a new book and started a new page and we are doing things that go along the vein of acknowledgement of Jason's "awakening". They see it, it is there and now I am not the only one acknowledging his presence. The complications are still there. Over night they got worse. They are being handled as best as possible right now and they scare the living shit out of me. Jason is deemed "fragile". Swallow that down with a gulp of your morning coffee.

I can't swallow it, the knot and the acid are back in my throat. I am good when I am business. I am good when I am matter of fact. I can't speak cut and dry about Jason. He is too attached to my heart. So my voice cracks, and I speak deliberately and pause. And sometimes to the wrong person I sound weak or incapable. 

I promise you I am not. 

I promise neither is Jason.

What Am I Supposed To Say?

Thank you? Ok? Alrighty Then?

What is the appropriate answer? Everyday Prognosis goes like a fucking yo-yo and my emotions go with it. We were ok. We were almost next phase. We were...

Almost doesn't count.

Last Friday, when I was the only one who lifted Jason off the end so he could vomit he still aspirated on some. Some food went into his lung and started a new pneumonia. My Immunity suppressed son is on antibiotics for E Coli and a urinary tract infection.

His dinuded skin has graduated to a Stage 2 Pressure Ulcer.

I have all these people calling me to "check up" telling me to "have faith". Like something I am presently doing is showing signs that I am not. People with perfectly healthy kids  who I hope and pray on everything holy never know one night of the nightmare I live advising me. "I know it's easy for me to say"...

No you have no idea, and for that you are truly blessed.

Please don't call. Please don't text. I promise you that you don't know how I feel. You could not imagine hard enough and nothing told to me other than the fucking cure for this shit is anything I want to hear. I want to crawl up and hopefully die where I am without hearing someone try to "talk me" into feeling better.

My son's suffering is not over. God I just beg you for a break. A pass, a clear sky to allow my son the healing he needs to get to a point where if he had complications nothing would endanger his life.

I believe. Everything I do these days show that I believe! I don't understand and I don't even question. I beg and I plead and I praise and my son is still getting worse...

I don't know what to do. I don't know what to fucking do.

It's Not Like The Movies

You see in the movies, the doctors are these people who come and mostly speak in absolutes. The tell you a diagnosis, matter-factly discuss treatment and every time they come you cling to the news and don't question it. That's not real life. That is not how it really is. Doctors are people like you and me. They have good days and bad, some understand things better than others. Some doctors are conservative with treatment, some aggressive, some even lax. But it is not like the movies. They have to have checks and balances. You have to understand what is going on. There are no secrets and if they need to teach you and explain than it is what it is.

There are medicines and dosages and regimens that need to be addressed. I never thought I would see the day when I would have to discuss my son's treatment with a team of people. I never thought this would be my life.

Bringing Out Excalibur

I believe in Karma and good vibration. By sending out good it will come back to you. I believe this. But I can't do it outloud anymore. Every time I voice my hope and expectations it seems like an army comes after it slaughtering every shred of expectancy until

They are unrecognizable and incoherent fragments of thought. It happened again. The plummet. This time it was'nt just his heart it was mine too. Along with the numbers went my hopes and dreams. Jason going from normal to the abnormal Is meriting another round of testing to find out why. We know why. It is a combination of drugs that no longer work for him. It is a combination affecting his new circumstances that will make me have to show my ass tomorrow because the "recommendations" and the "opinions" I am getting are highly conflicting of the obvious. In a few hours I am going to be sarcastic. I am going to be nasty. I Am going to speak to attendings and supervisors. In a few hours when the rest of the world wakes up I am going to fix this shit because i am tired of witnessing the obvious and having someone tell me "we have to wait and see". In a few hours we are going to "see me" fix this shit.

All I Want My Kids To Know

Right now I can't even be okay.

Moonlighting as MacGyver

. Children of the concrete jungle don't usually have pools. But that does not stop them for wanting $1 pool noodles. This summer I picked some up and allowed the kids to beat the hell out of each other with it, laughing the whole way. Little did I know on that hot summer's day watching my kids run around the apartment with cut noodles in different colors swatting them around like nun chucks that one day I would find myself desperately searching for those same foam pieces at 2AM on a cold December night to try to help their older brother. Jason throws his leg over the bed and bangs his shins and calves to the point that they are purple and bruised. The hospital has no provisions for this. They have no idea what to do. Thinking out the box to stop Jason from banging his legs on the metal bed I went home yesterday to dig through the kids toy box. I found (3). (3) pieces of a $1 noodle that i sliced up the middle with surgical scissors and taped to the metal part of his bed to protect him. I feel proud of myself. I feel good. I inspired the nursing supervisor to either get some or talk to the administration to make a provision to protect that part of the bed for other patients. Nothing else is going right about this situation but I stopped him from banging his legs and maybe helped someone else out there figure out how to better protect their loved one.

Now some rich bastard will patent this idea and make it his own, or someone will bring it to the attention of shark tank and my broke ass will watch it offered next year this time at every hospital in the free fucking world for three installments of $19.99.

When I am done paying these medical bills and I am the little old lady selling 50 cent ices on the beach trying to buy a can of cat food for dinner: You are welcome.

Tips For Families Battling ANMDARE

I am no expert. I have no idea what I am doing. "I didn't choose this life, apparently it chose me"

Here are some things that will

Not make you feel any better but might give you a very slight piece of mind about  fortifying yourself against this disease.

"One day my pain may be useful to you."

Create The A-Team

This is the crew. The ones that when the shit hits the fan you know you can call any hour of the night and business will get done. Your closest people. Your ride or dies. I am blessed with my crew. They were the most unlikely motley crew. But they came through and they made the cut. You know who you are and I love you.

In case of teeth grinding Invest in football guards and silicone mouth guards.

The mouth guards the hospital has suck. You don't want them. You will save yourself some grief 

Buy a clip fan

They get sweaty. No reason. Just out the blue. Clip the fan to the IV pole and put it on when signs of storming start. You are welcome!

Buy pool Noodles

First ask for bed bumpers. They thrash around and bang themselves. Then Cut the pool noodles and cover the metal parts of the bed not covered by bumpers.

Round with the Drs

There are no secrets. You need to know everything and make sure they clearly communicate the meds, effect of meds and the reasoning for any changes. I get a weekly print out of Jason's meds. Any changes are run by me first. I am not a dr or pharmacist but I made his body. I am the bouncer to his temple. Nobody gives him anything without my say so.

Invest in Johnson and Johnson

Jason is the best smelling patient in this place.

Carmex is your friend

Jason's lips are always hydrated

Grooming is important

Nails, hair, manscapinh is important. If you can't do it, hire someone. Beauty schools have students always willing to make extra cash and will come to you. It's worth it. Just because your sick doesn't mean your not human. Keep up with your loved one.

Ask questions

Medicine is a practice not a science. Doctors can be wrong. Ask, ask again, ask after that, and if you still don't like the answer or feel satisfied ask some more!!!

Take notes:

I keep better notes than the doctors. And I think they know it. 

This Is What Happens

When you go home for the first time to sleep one day. My kids decided I was a clown for not coming home in so long.

They Don't Know WHo I Be

I don't eat much anymore so the acid always burns the back of my throat. I battle the acid and a knot in the back of my throat most days. It's become the Yin and Yang of my existence. It gets worse when I feel bad. But today I am angry. I get angry now at the visiting questions. Because I am done being nice about saying NO.

When Jason was coherent he asked me not to let anyone see him in bed stuttering. Now that he is much worse than that I will not go against his wishes again. 

If it were you, and for some of you who constantly ask me you have been, in this situation: how would you feel knowing you were paraded around at your worst like a circus freak show? He is going to Rehab for REHABILITATION- how much of that includes social

Visits? The curious wanting an eye witness account of how bad you are exactly doing so they ask constantly. Even those who "care" so much can't seem to "care enough" to respect what he wanted and what I am enforcing. Meanwhile in many of their own cases when they were near death themselves, dealing with the death of a loved one or battling a horrific debilitating illness or car accident they retreat into the same shell I am in. Not wanting too much company, not allowing too many eyes to see. Dealing with the horror of my life everyday while

Allowing anyone who genuinely cares or just wants to be nosey a glimpse via this blog. How dare you? How dare you try to badger me at my lowest point into allowing you to see Jason because "you feel badly" "you are upset over this"  or you "want to see him"

Who are you? I mean really: who are YOU? At 2am when I am at his bedside crying and alone where are all you visitors??? I am supposed to go against what Jason would want so YOU could feel better? When he finally wakes up and is coherent, how many people do you think it will take to mess with his head over seeing him at his worst?

When Jason is ready for Visitors I will

Let you know. Those who persistently ask, text, leave messages on FB asking and call me right now in this moment of my life where my son is touch and go to selfishly request to see him to make themselves feel better will be unfriended, deleted and BLOCKED.

This is not about YOU. This is about Jason. His protection, his psyche, his well being is my utmost concern. When he is speaking, coherent and asking for visitors I will announce it every where and allow the flood gates to open. Until then my answer is a LOUD AND RESIGNATING NO.

If you think I am kidding. Ask me again.

God Please Watch Over My Boy

Of all the gifts God has given me my kids are the most precious. Jason is what I am most proud of accomplishing in this lifetime. I took a baby and raised it into a man and I didn't break it. Something else did. Now through the Grace of God I am hoping to fix it. Please pray for my son Jason. Please pray that his health improves and he continues to show improvement over this horrible disease.inhope none of you never know what this pain is. I beg you all to pray for Jason and help bring awareness to what ANMDARE is so that maybe they can one day find a cure and no one will ever have to go through this again. This is a living hell no one could fathom. 

#pray4Jason

Typical Me And Jason

The Best People Show Up in Times Of Need

The outpouring of support helps like you have no idea. Jason needs all the prayers, he needs all the hope and he needs all the love he is getting.

Please don't stop.

Thank you to Jason's football coaches and football mom for reaching out to me. The pictures of my baby boy enjoying  his football days are amazing. They are helping me right now like you have no idea.

I Didn't Choose The Game, The Game Chose Me...

Have you ever watched smog dissipate? I mean really stared at it? Until the very last wisps of air becomes so transparent you don't see it? If you pay close attention it never really goes away. If you pay really good attention and follow it there's always this murkiness to what you see through it. It's never quite clear again.

My life seems like that now. This illness that has robbed me of my son for the last  47 days has done this to me. So far it has taken 47 days and 47 lbs and it is still not done with me.

We didn't make it to the promise land today. We are still here "wading in the water"...

There's a hiccup. A really bad one that we don't know why.

A normal heart rate is between 60-100.

Jason's was 28. And it held for a little bit.

I'm not okay.

Keep Holding On...

I post a lot and can be very candid but there is still so much you do not know.

I have been away from him 24/hrs fever preventing me from going to the hospital. His grandmothers and private nurses taking care of him. I, between bouts of consciousness, call to remind them about putting Carmex on his lips and putting lotion on his feet. It's killing me slowly to be away. I fight with myself every other minute. I fight with Carmelo. I fight with the hospital. I cry until I cry myself to sleep, wake up and start again.

I don't have energy but I'm finding it. 

I walked into his empty bedroom today and started packing his clothes. Making him a bag for a place I am

Sending him to that has told me they can help make him better. I pray they aren't lying to me. I can't think past this minute because to think about tomorrow and all the changes that take place makes me stop breathing.

Picking through his clothes to decide what he would want. Finding his crocs and uggs just in case. I don't know what he might use them for at the moment, being in bed for 7 weeks, but I want him to have them. I have seen other people leave the hospital in just a gown and apparently vanity has not left my heart yet because I can't allow my son to leave that way.

He is loved and cared for and I cannot allow him to be Looking abandoned in a hospital gown wheeled out the front door to an ambulance. I want him in his clothes, with his shoes on. In case he has a moment of clarity I want him to feel more like himself.

I could cry. I could cry so hard the slight airway I have in my left nostril will close. I  am trying to be this strong person I am supposed to be because my son needs someone to prepare him for the next step. I need someone to prepare me. He's ready.

I'm not.

It does not matter what I want these days.

I need your help. I am too sick to wallow in the sadness. I need help to stay positive and this is what I need:

Here is a chance to be a huge part of Jason's recovery.

I need pictures, collages, friendly and creative items that can be hung on Jason's wall in his new bedroom to help remind him of life before ANMDARE and can help him come through the fog of encephalitis. All of his friends can send me pictures/funny memes with him in it, handmade cards, Xmas Cards, well wishes - anything that can be printed and hung up and focused on to help jog his memory sooner rather than later. You can tag Instagram/Twitter/Facebook photos with #pray4jason and I will

Find them and print them.

Videos I will

Download to a tablet so he can see them.

All these little reminders can help

Him snap out of the fog faster. In turn he will be ready for visitors.

Please submit photos, videos, memes of Jason, you and Jason to the email address below. Also contact me via email at Irenemendoza2013@gmail.com for any handmade collages you would like to submit. Please be as creative as possible, we want to decorate an amazing room for Jason. I am a big proponent of ArT Therapy. Art therapy will be helpful for all of us, and it will be an amazing gift for Jason to open his eyes to familiar faces and moments in life that made him Happy. It can help him remember, and awaken.

Right now we still will not be having visitors for some time. While Jason is better, when he was still

Coherent he asked me not to let anyone see him in the hospital and I allowed visitation once out of fear it may have been the last time you did see him. Now he is for the most part over that threshold and I want to allow him to receive guests when he is ready to understand who you are and respond.

I know you all miss him, but please think of Jason and what are his wishes. It is about what Jason would want and how he would feel. As soon as he is of a mind to have guests I will open the flood gates and allow it as well as offer weekly carpools to go see him.

Thank you for all your love, help and support. I need each and every one of you right now.

The Thing Is

While the news is phenomenal that Jason got into where we wanted him no one offers that reassurance yet. All is not clear. It becomes a point where you start to notice all their tells when they talk to you. Dr Hoenig looks down and shrugs when he speaks of the future. His tone becomes more cautious and deliberate. His smile not as easy. He smiles all the time so you notice when he holds it back.  The nurse practitioner looks away and pretends she sees someone. Then after future talk is over and she is speaking in the present tense she is able to look at you and smile. No one looks you in the eye and assures you he will be perfectly okay. No one acts like Rhonda. She was the only one that when Jason was at his absolute worse looked me right in the eye and gave me assurances. She might not have even been certain but she acted like she was. I couldn't catch her tell, I didn't see her flinch. With the news of rehab they still look down and talk to me about the future. The tone is still cautious like they see something ahead they are afraid to tell me about. They make me afraid to get happy because the let down is like a fall from a cliff with jagged rock at the bottom waiting for me. I am afraid. I want Rhonda.

God Please!!

I am trying to function like a human being. I am trying to keep medical coverage and an income to keep my son on an upward path to rehabilitation. I am trying to make all these decisions and moves to ensure he is going to succeed in getting better.

I am fucking trying!!! I don't sleep, I don't eat! I am sick and can't breathe.

I have an aide helping him to cover shifts to watch him because at this point I am so weak and I can't keep going like this.  Physically, mentally and emotionally. His grandmothers also help taking turns but it takes (2) people now to subdue him and his movements. He tried to climb out of bed. He tried to climb out of the Damn bed and went for his throat instead pulling out his tracheostomy. You know who Rapid Response is? Those are the people who come to try and make sure you don't die. You know they have come twice for Jason so far right? Twice they stopped him from dying. Do you know what that is? As his mother do you know what that does to me?!?! Mentally!? Physically!?! Emotionally?!?!

Somebody takes a knife every day and disembowels me from my gut to my throat. No mercy killing. It's slow. Every single day.

I pray all day, every single day. God please! Give me strength! Give me

Help! Protect Jason! Make him

Better! I am not strong anymore. I'm not. You think so. But I know. I am weak.