From The Mouth Of Babes

After the second opinion I came back to work and FaceTimed with Jason. Watching Jason practice walking with three therapist and a walker. It's exciting and hard to watch sometimes. But I did. Afterward I thanked God for delivering him from where he has been. I thanked God for delivering me from there too. Something cracked a while back. I still have the tremble.

I was home last night spending time with the younger ones because the concept of mom has become a figment of their imagination. Sort of Sasquatch if you will. They were happy we colored. Then cut up paper, watched tv and slept. They needed that. They needed me. Their sleep was sounder than it has been in a while.

This morning I tried to go at yesterday again, gearing myself up for the fight between his doctors. They talk to me like they know what they are doing and its finite. But we know it isn't. All they can do is try and they really have no idea how any of this will really go but they hope. They have seen cases before but this disease is not cookie cutter. Like everything it is subject to change.

Jason had chemo. They want to give him more. The reasoning doesn't make sense and that is where our fight begins. You can't just poison my child because you think it is a good idea. You can't validate it by telling me you have done it to everyone else. I mentally prepared myself for war. I got something completely different and I was not ready for it.

For the first time in 3.5 months, Today Jason spoke.

Opinions on Chaos

We were transported ALS to a second opinion. ALS means "advanced life support" for all of you who think further ahead about his progress. Just because he dribbled a basketball and gave me a peace sign, sadly it's not over. We are still in it. I met a neurologist who helped the success story I met. She saw us right away and took great care in evaluating him and giving her opinion. Her and I see eye to eye and are aligned with Jason's plan for treatment. She was overruled by her supervising neurologist who came in with her 2nd hand information and decided to offer something completely different.

The supervising doctor is going to talk to the neurologist at rehab and offer her opinions. In the end, regardless of her titles I am the Final say so. You don't pump my kid with stuff without my say so.

Medicine is a practice. 

It is not an absolute.

Don't be bullied into treatment ever!!!

...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.

The Thinker

Valhalla was beautifully cleaned off of snow when I left the hospital Sunday. Black top greeted my tires when I,heartbroken, pulled away after staying with him all weekend. 

Then I got to NY and hell has its fury on my car. Those in paved streets are where I live. Snowed in with my little ones for. Day and trying to calm the crazy because I missed a day visiting Jason. My bumper ripped off. Something under the car was ravaged to death by snow and I was forced to park in a Parking spot of a rather unpleasant person. I don't blame her too much. I would be mad if someone was in my spot. Now I have a rental and the hope that the damage to my car is not too rich for me to handle financially.

He was good. I wheeled him to the sink and He washed his hands and dried them with a towel without having to be told how.

He has his moments. Sometimes they are great because you see him. In there. Strategizing. Communicating. Doing some amazing things that make you sigh with relief.

Sometimes you have to catch your breath. Because Sometimes it's the Anti-NMDA Receptor Encephalitis that is working its black magic. 

He sits at the edge of the bed, when you let him. Dangling his feet and resting his chin in his fist. I try to talk to him but he stays quiet most times. I wonder what's going on in there.

Jason I wonder what you think about. Hurry up and get better so you can tell me.

Nightshift

I imagined it. Jason would be alone this weekend because of the storm. Maybe that is why it happened. The hospital is understaffed. The storm initiating the tales of woe that started from early this morning on the Head nurses phone line. She was excited to see I was still here when she assigned me my job. I am Jason's 1-1 tonight. He's my son. That does not scare me. The parent too bougie to care for their own child should be slapped. He has a nickname among the nursing staff.

Night shift.

He matches their shift minute by waking minute. Keeping them on their toes like a 16oz cup of Bustelo to the brain. He fidgets. He shadow boxes. He tries to stand in bed or kick at the netting. All stereotypical behavior of the disease. As the brain tries to heal it makes you do some crazy things. This behavior is a far cry from the fleeting moments My Jason shows up and does something amazing.

Tonight for the first time he moaned. I am not sure if he was testing his ability to speak or tickling his trachea by the sound. But it is another new and exciting step towards "awakening". In the meantime, I'll watch him do his fake basketball dunks, try to bite the gloves off and swat the netting. It hurts sometimes to see him go to that mental place where I can't find him. But it is all part of the recovery process. No matter how ugly it sometimes get, I have to hold fast that he is still unwavering from recovery.

Miracles Happen Every Day

On the first day of the 2016 Bizzard in NYC the Governor declared a state of emergency. I am at the hospital - day 2. I face-timed with my husband and babies heartbroken that my fractured family is in two very distinct places for a variety of reasons. I have gone out 4 times now to clean off my car. I am not attempting to leave the hospital for another day, but I don't want to clean off a mountain of snow when I do. I am here for Jason, caring for him and snowed in with him. Much the same as Paul Walker in Hours. I hear the nurses grumbling about wanting to go home. A few have called out leaving  the burden of caring for the stir crazy kids to the tired and weary.  I get it, I want to go home too. But I can't, because Jason can't. And I cannot be away from him.

He looked at me again. That amazingly beautiful look full of his personality and his intelligence that comes through in very rare moments. I was talking about Bachata to Rosa and Arya. Jason was captain of his Junior High ballroom dancing team. I was so proud of him. I went to the competition and although he came in third in my eyes he was number 1. He knows. He knows How much I miss him. He knows When I need a fix. He sat at the edge of the bed and pushed us away to allow him to stand. Then he held my hand in perfect form and looked into my face. 

The room was quiet, as we waited to see what his next move would be.

With a slow deliberate sway he did the bachata two step with me. Then he smiled.

On this freezing, white out day where people curse the world for slowing life and time: I thank you God for allowing me this moment with my baby.

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?

The Art of Shadow Boxing

“My thoughts must be relaxed, be able to maintain/Cause times is changed and life is strange..."- Can It Be All So Simple"

The struggle is real. I do 60 miles a day my poor car can tell you. Sometimes I do 120 because I forgot something. Every single day. In rain. In threat of snow. I don't care. I go. There is laundry to do, grooming to keep up and procedures to check on. And I have to talk to him. I have to talk him to death so one day he answers back and tells me to shut up. And I remind him I am his mother and threaten to slap the shit out of him.

This place is nothing like Columbia. But I will tell you, if you have a loved one in a hospital, rehab or hospice- do not become complacent and think you become family because you see people daily! No matter how much people smile- this is their job. The extra is up to you. No one loves your loved one like you. Nothing has happened. No incident to report, quite the contrary. But I am Going off of old experience, I trust no one. 

Carmelo and I watched Jason shadow box Sunday. Funny because although I do feel dead inside a very small part of me in a low voice played Wu Tang in my head with all the Karate sounds. For a second I actually thought to record him and to wait many lifetimes from now when he is better to show him. But I didn't. The new me wanted to burst into tears, the old me held them at bay. 

Jason has not slept in (6) days. This is the norm for ANMDARE. There are dark little green veins reaching into the blackened circles under his eyes. Apparently, one girl went a month. If you my lucky reader have a family member dealing with this, know you are not alone. You are not unique with an insomniac on your hands. Sadly, you are graduating into another level of our prestigious club. We are trying sleep aids, so far-no dice. I am still advocating for meds to come down, not letting anything go up. All

I can do is hope and pray harder. Rest and sleep helps heal the brain. Rest and sleep brings back the normal. Tonight, all my prayer warriors I ask that you band together to do me this one big favor: please ask for Jason to have a comfortable sleep that lets him awaken refreshed and rejuvenated. A sound restful sleep so he can be Ready to start a full day of therapy tomorrow.

Father Figure

"I will be the one who loves you-til the end of time..." Father Figure/George Michael

It is the same as before, for those who for some reason pray for different. I am his only biological parent who cares what goes on. I am asked all the time, by people who know Carmelo is his stepfather: "Has his father contacted you? Has he come by?" Like Carmelo is some cheap imitation of what they expect to arrive. I am always perplexed by that question. Do they know something I don't?

Jason's biological father lives in Yonkers. He makes no attempt to show any acknowledgement of the son he abandoned. Jason's uncle, called him to tell him which makes it look worse for him in your eyes I guess? He is fully aware. But Your definition of father and mine are two different things. Jason's sperm donor decided he did not want to be a father when Jason was born. Father is a title he has been given before Jason and after. In both instances he has stepped up where for Jason he stepped away. By some accounts he is still failing in the capacity but as I sip tea here with Kermit the Frog I lament that is none of my business. I am grateful he knew his limitations and let me take the reigns. Truly. Aside from his legal child support obligation he has nothing to offer. He does what he does with the kids he chooses to acknowledge. Everything else is between him and God. I had Jason without him, if God forbid something happened to Jason, he never earned the right to be there. 

What would you like to hear? There is no wild story about why he is the way he is. He just is. He is married with children and could never find it in him to look for a relationship with Jason. Just a few Miles away from his home Jason struggles to come back to life. That is the story. Jason's grandmother came to the hospital and I am honest when the nurses and doctors ask whose mother she is. She isn't mine. She played it off like Carmelo is her son. The shame of reality being too much. Funny one Dominican Aide didn't buy that story.

He asked me in Spanish,"Diga me, esa senora es la madre de quien?"

"I looked at him and said with certainty, "La papa de Jason."

He squinted his eyes at me and smiled. "Y Carmelo es la papa de Jason?"

I nodded affirmative, raising my chin slightly in defiance of his questions.

"Ah no, Una mujer tan chocolate no se puedes tenier un hijo tan blanco y un nieto tan blanco como Jason. Si el abuelo de Jason era blanco como papel y meclo con esa mujer tan chocolate uno de Los dos tienes que salir como cafe. Eso dos son muy blanco. No se, el abuelo de Jason tienes que preguntar la mujer algo."

I laughed hysterically. The sound was foreign to my own ears. But it was genuine.

If I had the time I might wonder how him and his wife sleep at night? Oh, what's that Kermit? You are right, that is none of my business.

Carmelo accidentally showed Jason the photo of a half naked Brazilian model. He tracked that! And he laughed when Carmelo teased him about it. My baby comes back in a mosaic of moments that don't quite fit together yet. Thankfully he has a dad now who loves him enough to care. This time around I am not the only one enjoying all of Jason's firsts. I have an amazing husband who loves this kid like his own and does everything a father should for him.

The Winds Of Change

Like this disease, our lives are hard to explain. The lines between good and bad are blurred, no longer an absolute definitive marker that separates the two. Nothing will ever be the same. Now that more acceptance of that has come into play it no longer just applies to how Jason will live his life. It's how we all live now, and adapt, and come to deal and handle each other.

"But you always..."

"You used to..."

"You are known for..."

Not anymore.

The people we were before October 18th, 2015 are no longer the people we are. It remains to be seen on what blurred realm of good or bad that ends up. Right now there is no evidence that can substantiate good or bad yet. It's just different. Jason's different. I am different. Life itself is just "different".

Those that love us will adapt to the changes and find a way and those who don't...

Well your part in the story ends here.

Peanut Butter Vibes

"My, my simple sir, this ain't gonna work

Mind my wicked words and tipsy topsy slurs

I can't take this place,no I can't take this place

I just wanna go where I can get some space." -Gooey/Glass Animals

I joke about being surrounded by delay fish. But behind every joke is some truth. I am actually becoming one. Jason has made progress. Out of irrational fear I delay to tell you. Not because I want to hold back information, but because I have learned with this disease that there are no certainties. Jason can attempt something today and suddenly never seem to try that action again. Lay people don't understand that. They don't understand why if he dribbled a ball today why he can't slam dunk tomorrow. I don't have the patience or energy to explain. So I pull a Bill Clinton. I don't answer texts and calls so basically if I don't let you ask I won't tell. You get the info when I can. No matter how much time passes, this situation has not dulled. Its ironic how people who have been in this exact situation don't seem to understand that. I am still trying and doing the best I can and this whole thing is hard as hell. I am back at work. Doing the everyday. I don't want to but I have to.

I have to work to keep the medical coverage that keeps Jason in such a nice place. I have to take care of the brother and sister Jason tracks around the room more often now. They miss Jason terribly, they talk to him in preschool jibarash but he doesn't respond like he used to and they notice. 

I put on my clean makeup and smile because the ghostly ashen look is old already. I look like I just stepped out of Katrina and now I try and look and dress like I am in my twenties and carefree. It's an act. All an act to get people to think things are ok and move on because no one can take suffering this long. I cry in private for the normal life I want back so badly. I cling to the positive when I answer how Jason is doing, and I hold the negative, sparing most the sympathy pains I see in their eyes. 

I sat my son up in his wheelchair the other day by myself. I never thought I would do that. I never thought any of my perfect babies born with their ten little fingers and ten little toes would have to sit in a wheelchair. I never thought it would excite me to know he at least can do that much.

I accidentally dropped my keys on the way to go to Jason yesterday. I made a stop to bring fresh bagels to the nurses who mother Jason in my stead during the hours I work. Every stone to the road to hell was paved with one of my good intentions. I could deal with a lot of shit, and have, but my psyche stays a little fragile these days. I needed to calm myself before calling the maintenance team for help. Thank God for nice people.

In other exciting news:

Jason walked. He walked from his bed to the couch. His steps were struggling and stuttered, and I and an aide helped him but he made them. I was as proud of him as the first time he ever tried them-almost 18 years ago.

It was de ja vu in a way. Proud of my baby boy's accomplishment, 18 years since the first time I ever saw them. It is bittersweet to watch him, handle all these firsts again. I am so happy he is here to do them, and so sad that it is him that has to go through this. This is the type of disease that happens to someone else's kid that you hear about in passing. The disease that makes you feel so bad you actually take a minute to ask God to bless that kid and their family. This type of thing never happens to your perfectly healthy pain in the ass teenager.

Jason is doing well, making strides everyday. We are going for a second opinion to see if anything can be done to make him go faster. Funny how everyone warns it could be a year or more before he is back to himself but then they tell me there may be a way to speed it up. You have to way your options and figure things out. You can't cling to every word a doctor says.Sometimes the doctors have no idea what they are talking about.

For now, don't be fooled when you see me. I once told you I am a pretty good liar. I will tell you "tudo bem" and be dying inside. Just please keep praying for Jason. Although he is definitely better than he has been, the prayers, the well wishing helps more than you know. The good vibes are kind to him.

In Deed

I sit there thirstily clinging to every movement and every word. Anxious. Happy. Excited. Jason doesn't speak. He tracks. Watching a person's movement as they enter a room. He hugs you back. He also punches and pushes you away, an effect of brain injury recovery. There's definitely aggressive behaviors in terms of his way of getting attention. But I'm told it's normal. No matter who he was, Brain injuries bring you back slowly and with bad behaviors first. He sat in his chair, and hugged Samantha and had to be stopped from trying to hold too tight. This is not Jason. This is the Anti-NMDA that loosens control slowly and still tries sneaky ways to continue to Jab at your life before giving it back to you.

There is no speech yet. The words I drink from are usually from the therapist who explains what different things mean to her and in essence what they should mean to me. The tracking is huge. The once sporadic behavior is now becoming an everyday thing. He shook his head to the harness for the wheelchair. He doesn't like it. He pressed the red button on FaceTime with me, I guess I talk too much. I'll take it. Every last drop of it because after I filter through all this bullshit I will have back my son. My beautiful baby boy is there. He has always been in there! Even when people came to visit and told me I should prepare for him not to be. Even when people wrote me their condolences on my Facebook wall. My son is not stopping and he never gave up and I never gave up on him. You cannot always trust what you see. You have to go with your heart. You have to go with what you know. I know Jason is coming out of this. I know I will be by his side and give him every tool He needs to get passed this. I know my son is going to be okay.

A Benefit For Jason

I don't have the blood relative family dynamic you need to endure this suffering. But God knew that. In this life, through my travels I have picked up people along the way that have blurred the lines between family and friends. They filled in the gaps for the mother/father/sister/brother and cousins I needed in this lifetime. Below is an event put together by two of my very good friends Kevin and Maribel Bobe on behalf of Jason 

Two people I don't chill with as often as I like. I was in an MRI with Jason when they visited the hospital. But no matter time or distance our friendship and that love for each other never has dissipated. I am honored to have so many amazing people be a part of this, and so many other things that have taken place to ease the burden on me and my kids. There were Xmas presents and prayer groups and collections and so many things that just took the edge off slightly when things were at the boiling point. You have no idea what these efforts have meant to us. You have no idea how like angels you swooped in, always at the right time. There was the rallying of the troops by Enid Agosto, Chelsea Russell, KGE, Nicole Devito, Ricardo Dias, Kay Oh, Sylvia Hernandez, Carmen Roman, Heidi Piniero, Heather Bechtold, and countless others that have come to my aid. You made me cry! I'm dehydrated and you made me cry because I would have never expected anything from anyone. I am usually the giver and to see so many help me and Jason and our family: Thank You. From the bottom of my still broken heart I thank you a thousand times

Over and I don't know how in the world I will ever repay all this but if i know myself I will always try. Again Thank you.

Good Times

"Do you ever wonder what's going on in his head?" Florida Evans asked me in a Carribean accent. She really isn't her. But she reminds me of the mother from Good Times. Her rich brown skin glossy with moisturizer and her salt and pepper hair cut short into a pushback.

I don't. I can't. My imagination is on crack right now and what I can conjure up would scare me in the light of day fully awake. I watch him laying there. Reaching up towards nothing and swatting it away. Florida rubbing him with her white frosted plastic gloves trying to soothe him. His vision is currently impaired, a result of the brain inflammation. Typically as the swelling subsides it will normalize but right now I have no idea what he sees. He behaves to me. The doctors are astonished by the fact that he listens. He is obedient to me even in this state. If I tell him to stop he does. If I tell him to do something, typically he listens if he can do the action. This isn't typical of these patients I'm told. That brings me a measure of comfort. Even going crazy I raised a boy who would never disrespect his mother. 

He doesn't speak. He just listens. His eyes sometimes don't register coherence. He is just trying everyday to get better. That's all. He is doing better than he should be in such a short time and he is pretty impressive with what he can do. I sipped the Kool-Aid. I talk about him to people excited and my swollen chinky eyes, so thickened by the crying I have done the last three months, bright with happiness for him as I tell people the story of how he dribbled a ball from his wheelchair. 

I can remember a time when this wasn't my life and I instantly pitied the people who had to talk like that. Talking about their sick kid or excitingly talking about an achievement performed with impairment. I can remember thanking God for my healthy kid and going home to my perfect life.

Life isn't perfect anymore. But I don't think I appreciated it to the extent I should have when it was. This is the new normal, for now. He is on the upward trend and that is all that matters. He stood up today, holding on. He sat himself in his wheelchair and pushed himself back. That is today's tremendous feat. I'll take it! Without complaint. My cheeks are still wet from the days I feared he would not make it. I continue to pray everyday and talk outloud to God like he is my imaginary friend. It brings me comfort, it helps me. I praise God Almighty for allowing me this day of life and further because I was there to see my son.

The Call of Miracles

I have had news for over 24/hrs now. I couldn't share it because I needed to hold it close to me and my immediate family for a second.

I was at work. Answering to all the scatter brained mistakes I recently made. Trying hard to not cry over all the things I have done wrong recently, and trying to make sure I don't make any more mistakes.

Jason has an IPad I leave in his room to Face Time because I need to see his face sometimes through out the day.

I had three missed calls and I panicked and called back. Hoping against hope it was some accident that they called so many times.

The nurse answered laughing and smiling.

"Mommy! I had to call you because I knew you would not believe me!"

She switched the camera view on the IPad.

There was Jason dribbling a basketball from his wheelchair and throwing it to the therapist.

I cried hysterically and I thanked God. The doctors and nurses all had tears in their eyes. 

My baby is surprising us all.

FaceTime Miracles

I saw it with my own eyes and I blinked hard and swallowed back and blinked again. I had missed the call

Three times, and I was terrified for what would respond when I called back. The aide answered and the first thing she said was, "everything is ok! But I have to show you!"

Yesterday Jason was in bed. Staring at nothing and watching no one. Not responding, not reacting. Just existing in a bed and not moving too much.

Today he sat up in a wheelchair and played basketball with one of the therapist. I watched him on FaceTime grab a basketball, dribble it and shoot it back.

Thank you God for this amazing feat. Thank you God for taking control.

Thank you God for caring for my Jason.

The Many Supporters of #JayNation

I have been looking through the hashtags and the social media sites when I am traveling or waiting for something. I cry. I cry every time I see one, even if my dumbass asks you to post the pictures. I cry for every bracelet a mixture of sadness and happiness. I'm happy you wear them. Shocked and amazed at how many are out there. Then I cry because they are for my son. These bracelets are for rich athletes that cheat a little in races with Ginseng. Not for little boys from Queens who sometimes think they are too grown.

Thank you. Thank you to each and every one of you who wear the orange bracelet and bring even the slightest attention to a faceless disease that has a ridiculously long name. Thank you for acknowledging how real the struggle is. Thank you for supporting Jason. He needs every bit of it.

And The Beat Goes On

It's hard to live like this. Life goes on and you have no choice but to go on with it. Jason is still sick. Thankfully I was blessed with a job that gave me the time I needed to at least find out what it is he has and set him up in a decent place. But so much still has to come at me so my kids, family and lifestyle can stay a float. I have to function even if I want to just stare at my son for hours on end. I have to work and clean my house and wash clothes and do everyday things because you don't just get a maid and hit lotto because tragedy has struck. Life goes on. Now there are applications to institutional Medicaid and fights with Jason's biological father over his portion of doctor bills and nonsense that my heart and head don't have room for.

It's bullshit. All of it. No matter how much I wish it would all go away its part of life and has to be handled because that is just the way it is. You have to inhale the good shit and exhale the bullshit no matter how much you don't want to play this game. That's what this all is. A huge Arena where before you know it you are tagged "IT" and the cosmos watches what you do with the ball. 

I am still going apparently. Long since I thought and said I was breaking and would do so. Jason is still going. Even after moments I thought he was too frail looking to continue. The strength to do this was given by God to us both because I recognize the points in this Odyssey when I did not have it. The   Support given and offered by all of you who read, help, support and just give me space helps. 

Sometimes I just need space and time to sort and filter through the madness and hysteria ANMDARE has made this life. In the end no matter what I tell you there is a whole nother more important story than what I am telling you here. There is only one person who could tell you the true nightmare of what this disease is. The worst part of the story someday I hope will come from Jason.

Jay Nation

Thank you Mr.Bowen, Mrs Dumont, Mrs McDonough, Mr. Weiner, Mrs. Karalekas, Mr Gelfand and Mrs Rosenfeld.

#Pray4Jason.com 

Until he is better...

Until there is a cure...

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.

So Happy For Emilie

This is one of Jason's neighbors. This is Samantha's new friend. She saw Samantha walk-in with a baby blue Elsa tutu dress and her face lit up like I had never seen her do. "You look beautiful." She said to Samantha and I set out To get her one. I couldn't find her size in the exact one Sammi had but I did manage to find the next best thing. I got her the outfit she is wearing. She is a beautiful little girl, her parents, grandmother, sisters and brother are all sweet and amazing...we are sort of forming a little community cheering and looking out for each other, who would have thought any of us would ever meet?

See link below for the story:

http://abcnews.go.com/Lifestyle/princess-elsa-surprises-girl-recovering-traumatic-brain-injury/story?id=36032197

Children Of The Corn

While sitting at Jason's bedside a little Asian girl about 8 years old with thick glasses rolled in on a miniature wheelchair.  Her dark hair up in a ponytail and Parted in various places where patches of scar tissue from something a long time ago changed her life. "Hi!" She said with a slight slur. I watched her as she walked in and smiled instantly. Always trying to be conscious that no matter what I feel on the inside she is a child and she should always be greeted with kindness. "Hi!" I offered back with as much enthusiasm as I could muster.

"Is that a big boy?" She began in an almost incoherent pattern of speech.

"Yes."

"Can he play?"

I had to swallow back before I answered. I looked at Jason laying there motionless. The constant hiss of the humidifier running through his trach. His long eyelashes dusting his cheeks. The peach fuzz now growing on his once clean shaven face identifying him as a "big boy" to her. I thought of him in another time and space. Every kind and playful moment he had playing with Samantha. Holding her Barbie's, playing with Play Do, letting her comb his hair.

I took too long deciding apparently. She impatiently asked me again with a feisty little attitude that almost made me laugh. 

"Can he play?!?!"

"I'm sorry honey he can't." I choked out tearing my eyes away from him to focus on the cars out the window.

"He taking a nap?"She continued to probe me.

 I was hoping the nurse walked in. I never met her before and didn't know how much cognition she had. Could I lie and say yes or explain he's sort of catatonic?

No one came. I went for the former.

"So can he play when he wakes up?"

Little Miss Fiesty was relentless.

"No sweety. He is too sick to play right now."

I was able to look at her when I said it. And the loneliness in her eyes struck me. She dropped her head and shoulders and said,"ok."

Slowly using one hand to awkwardly wheel herself out of the room. I felt so badly denying her anything.

Later on I asked the nurse who she was and she explained. She told me the kids have recreation room times but most are bored at moments through out the day and look for people to play with. They ask anyone they see for attention and are anxious for something engaging.

I brought Samantha and Tristan the next day, strapped for childcare and desperate to be with Jason. I brought a stock pile of games and toys to keep them occupied, knowing how to control my bunch. As they sat on the table with play doe another little girl appeared in a similar wheel chair. Her scars not so obvious. She pulled up to the table where Samantha and Tristan were making Play Doe food and joined in. The nurses coming in after her to ask if it was okay and the little girl looked at me innocently. Anxiously awaiting a response and confused as to why someone would question her ability to play. Of course I allowed it. And my little princess showed the hospitality of her mother inviting her new friend to everything we could offer. Samantha was the equivalent of drawing back curtains and letting sunshine in. She was polite and playful, wheeled her friend around and tried to help her whatever way she could. Now Samantha has a friend who asks for her daily and Sammi is always her friendly silly self so other kids love her too. 

Five 1/2 years ago I was given a beautiful little girl. Many moments through my life with her I thought I knew the reason why. I always thought it was to save her from a terrible life. But I think I was wrong. I think she was given to me to save me. To allow me to give her the opportunity to be the best she could be so she could brighten the lives of others. If you could see the excitement of the kids she plays with. The brightness in their eyes, the excitement in their voices you would understand how much of an angel I was given. My little Sammi is just herself and she brings joy to even more people than just her family. 

God is good all the time.