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.

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...