Laughter IS The Best Medicine

I don't have that mom that offers to watch my kids. I don't have a dad I can go to for money. I don't have that close network of family members who bind together and create a unified front in times of tragedy. I have a few.

Don't get me wrong - I have a few amazing cousins and aunts who go above and beyond the call of family. But to fill in the cracks and fault lines where crucial family members are missing in between- I have been blessed ten fold with friends. These amazing fucking friends who I don't talk to nearly as much as I like. Or get to visit nearly as much as I should. But we love each other to the point that they know energy. They realize through absence and contact that something is not right with me and they hear the call for help and pick up the baton and handle it. My friends Kevin and Maribel put together a benefit for Jason. Something to create a buffer between his medical bills and me. This is hard and in more ways than you can be told. It takes a toll on everything and tries to drown you. But my friends won't let me drown. They banded together with my friend Yesy, who bought in Richie, and all of a sudden there was a comedy show with elegance and delicious food and beautiful center pieces and raffle baskets.

For the first time in almost 4 months I laughed. Not a polite chuckle or snicker to conform to the group at work or in public. But actual laughter. The sound foreign to my own ears. When I looked to my left Carmelo was laughing too and it felt so good to feel normal for a minute.  This disease makes you sub-human. It makes you animalistic. You live a life where you have this dirty secret you don't tell anymore because people are tired of hearing about it. If you keep giving bad news people lose hope so you only tell the good and you hide your fears because no one can be sad this long.

200 people showed up to the benefit and that was an amazing site to behold.  200 people woke up in Antarctica with me Friday morning when the snow decided to flex and I thought I would be there alone. 200 people cared enough and bought awareness to this POS disease who I am going to continue to fight against until it's done. Well after Jason is better I will be in this. I don't want anyone else to go through this. This time was enough. 

Thank you God for blessing me with amazing people. Thank you God for allowing me in my quests to find amazing family.

Thank you.

...and Chicken Grease

I thank God for Steve Jobs. I know that's an odd way to start a post-but I do! He made it so we amazingly have ways to see and interact with our loved ones no matter how far away. The snow tore apart my car. Work too crazy to leave early. I missed Jason for 2 full days and I needed meds to calm the anxiety. I have never not been there this long. I call every hour like the parent of a newborn not an 18 year old. Even in the middle of the night, much to the chagrin of the nurses looking for an easy night. I feel guilty for oversleeping even just a few minutes and in a panic dial frantically.

I got him an IPad and loaded it with all his favorite things: pictures and videos of family and friends, music and things that he loved. We face time. Usually the aide calls and tells me what's going on and I watch what he is doing. Witnessing his progress or his new delay. Today has been the best day yet. He lingered in coherency long enough for a 5 minute call. He just watched me. Still no speech.

I told him I love him. I then asked him how he was. Unprovoked and uninstructed He gave me a peace sign.

I stayed brave through out the rest of the call, holding back the breakdown that came. Even when he started to drift to that unpredictable dark place where he has no control-I didn't break.

I waited until I thanked his aide and pressed the red button. Then I cried like the beatings I had ever gotten as a child were all being given at once. He is coming back! It's slow and it's not 100% percent yet but everyday it's happening for more and more minutes at a time.

There were points in this Odyssey that I never thought he would get here. My sorrow to thick and murky, drowning out every feather of hope and tarring it to a point of no return. The doctors, the same ones I fear and barely trust said so. They said, "one day" as the looked off Inthr distance and didn't make eye contact.

We are almost near THAT day. I can feel it.

Windswept

He slept for 3 hours prayer warriors, thank you. But I stopped the sleep

Meds. He desaturated and luckily I was there because like I said before don't get comfy. Everyone is nice but it is still just "their job" and that is MY LIFE in that bed. No one paid attention to the trend but me and guess who caught it before it got bad? (((Pointing at my motherfucking self))) I can't give him meds to fix one problem and start another. Eventually his body will go to sleep. Last I checked we all need to breathe.

He's confused. That is the best way to explain it. Imagine Ground Hog's day where every day you wake up in a netted cage with paddles on your hands and you are explained why being held captive is for your own good. What would that do to you mentally?

I can only imagine how he feels. How confusing it must be to have people come in and walk around like this is normal. They say he won't remember. None of them do. But I do. I told you after a while, you accept some crazy shit. Imagine if a mother said out in public matter-of-factly, "My son has been restrained for 3 months now in bed. I'm going to see him again tonight and do his laundry."

I struggle with that. The fact that is the theme of life for us right now and I can say that straight faced. To combat the crazy I try and make it normal. When I am there I let him out. Gloves are off. Netting up. I swore my son would never be in a cage and I can't stand that I have to allow this. It's for his own good. He grabs at the trach collar and he rips at his g-tube causing granulomas. I wrestle with him to stop every night and I win. That is my price for his freedom. Cardio and anxiety fueled starvation that has me as of today 101 lbs lighter than when this started. For those of you who have seen me and been envious, hug your healthy kids for me. Know my son's health Is the price I have paid to look like this. I would take every pound back to have my son back to normal.

His Enflamed brain tells him to punch and push and I stop him and dodge blows like a domestic violence victim who loves someone and holds steady to the knowledge that this person loves me and a disease makes them do what they do.

This is hard, have I told you how hard this is today?

On The Mend

He reached up

With two fingers to gently scratch his nose.

He rubbed his eyes softly.

He realizes there is an opening on the bottom of the bed so he scoots himself down and throws his legs over the side in an attempt to get up and out the bed.

Jason is moving. A lot more than he had a few weeks back when he was basically sedated down to a warm body in a bed. He is moving around in calculated ways. Showing problem solving in ways you and I take for granted. In a previous post I told you about how I look upon the doctors and therapist and hold back my eyerolls on how happily they praise the way he blinks. But now after educating myself a little I understand. Jason, behind all the meds we are peeling back one by one is coming back as Jason. They recognize the signs of "bizarro-Jason" brain damage and brain injury would produce and their excited talk and bright eyes are because they don't see that. Jason is doing what a normal person coming off of meds or coming out of illness would do, and THAT is what makes them so optimistic. I have my nightmares and my imagination to fuel what my expectations of what Jason will be underneath all the meds will be. But these are professionals. They know exactly what to look for and they don't see bad stuff. They don't see a degenerated individual. They see something better. They see My Life. They see him coming back as MY Jason.

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.

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

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."

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