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.