The Good Book

"

Some Day, This Pain Will Be Useful To You..."

-Deanna of Walking Dead, Quoting Ovitz

To help the sufferers, to assist the survivors.

Pray4Jason-  The Book

Release Date Summer 2017

Knut The Polar Bear

I found this article which helps go into detail about Anti-NMDA Receptor Encephalitis. It goes into the technicality of the disease and shows pictures. It gets clinical to the point that your eyes may cross but if you really want to understand the disease - pay attention.

Knut The Polar Bear had ANTI-NMDA Receptor Encephalitis

Apparently Knut the polar bear had it and it caused him to drown. A polar bear who swims everyday drowned because of this disease. Let that sink in a little - and use your imagination as to what this disease can do to humans. The disease itself has not killed anyone yet. People have died because of all the complications that come up from the disease.

Fatigued

I haven't slept much the last few days. A lot is going on. Procedure was delayed again. I am upset and frustrated and there is nothing I can do. With the right last name I doubt I would be going through this. He was supposed to have this procedure done last Thursday but apparently that department is the busiest in the hospital. Jason was not considered an emergency. Here is sat in bed for another 5 days to try to be

Today You Don't Scare Me

The moss has grown to the point where The Invasion Of the Body Snatchers is almost complete. The difference between them and me remains that I am emotionally invested here. But my poker face is back today. I don't well up and cry when they tell me all the scary things they propose to cut or implant or inject with. I am not letting them see me cry today. Today I will not appear compromised and emotionally unstable because today - although on little sleep I feel sound. I feel able and I feel completely with it mentally - in the bizarre universe that is this prestigious hospital.
I am terrified.
The tremble is real and my insides are racing with anxiety that makes me wonder how I am still able to walk and talk. My words to them are deliberate and in a tone where theirs change depending on the way they wish to attempt to sway me.


I am making one decision today. The decision to agree to allow him to rest.
Once we clear the complications we will be gold.




Dear God,
By your stripes he shall be healed.
Amen.

Turning The Page on GoodBye

As my husband would say every time he realizes I have not written in a while, "not writing to them is like leaving them with their ass hanging in the wind."


I could not help myself. I am from NY and sometimes we need a NY minute. The PTSD is strong and I am wading through it.


Jason is coming home.


Today.


Reread that and let it soak in and then you will understand why I needed a NY minute. The recovery I promised has come. There is still therapy and mental deficits we need to watch for. He could have any number of issues now, ADD/ADHD/Dyslexia. We are getting him therapy to search these out and know if they are something permanent or temporary or if they exist in him at all.


The PRAY4JASON Book is coming Summer 2017 to help all of those with this damning disease and offer help and support on what to do and how to do it.


Jason is amazing. He is talking, and doing everything he always did. He was wheeled in to Blythedale Children's Hospital with a breathing tube and on a ventilator. Today he is walking out carrying his bag on his back.


Every day he takes my breath away. I can still close my eyes and take myself back to the day when I had no idea if I would ever see him again. The real Jason. The Jason that is telling me now that for the last 16 months I skated on his allowance.


There are not enough Thank you's in the world to express the love and gratitude I have for all of you: my beautiful caring readers. You have donated to his page, brought me food, sent me cards, wrote me letters, left your comments, and most movingly prayed. You prayed so hard for me to have back my boy - and you have no idea what that has meant to me. You were the strength that carried me at times when I was weak. Jason has made a complete turn around through the Grace of God and the strength and persistence of those that love him.


I gave my usual early morning call today Blythedale, to check on Bruce Banner. I cried with Amy on the phone. I realized today saying goodbye to everyone at Blyethdale is going to be super, super hard. I am going to miss so many wonderful men and women who took care of Jason and helped him under some of the most strained circumstances.


Jason w/  his second mom "NURSE JEAN" and his Fearless Nurses Aide "Diana"

. Preparing my eyes for all of the expected leakage. But I will spare you all that drama on this forum. This is the end. The last entry in the campaign to PRAY4JASON.


Amy, one of the amazing nurses at Blythedale told me she said goodbye to Jason just a few minutes before my call,
"Jason take care of your mom. She never gave up on you",she said between sniffles.


It made me cry, and I guess her words, as emotionally charged as they are, are the best ones for this moment:
That is how I am ending this blog.
Never Give Up.

God's Time

The day started, like most days of the last 16 months. As I stir in the morning to wakefulness I begin thanking God. I thank him for the morning, my life, my family, my health and I begin to beg for Jason. Even diagnosed with cancer, Jason's health is who I beg for. Everyday no matter what. I ask God to keep his healing hand on him because I already know that God's work is being done.

Jason text me. Then he called me. He wanted his bank card.

"Mom, I don't know where my bank card is. I think my social is..."

I sort of sat there. Frozen.

Up until this point, Jason has been coherent, but ADD. He has a thought and in the course of a sentence would lose"it" or change the subject.

He called the bank and understoodthe verification process and he needed help.

He talked to me for a while and every thought was cohesive and made sense. He was deliberate and thoughtful. Calm and collected in purpose.

It happened like they said. The doctors warned me this day would come. Coherency turned on like a light switch.

I told him I had to go. I heard it in his voice. His speech pattern and the tone.

For the first time in 16 months i just had a conversation with Jason. My pre-NMDARE Jason.

I needed to stop talking to him because the emotion was erupting like lava thru the crack this disease gave me a long time ago. I was happy, I was sad. I was relieved. 

I could hear the doctors in my head. "The psychiatric  part is one of the last things to go."

"It could happen just like that! Where one day he is just back."

This is it. After all this time. It is really over.

I was anxious. I wanted to scream. I had this feeling coming over me, that I havent felt in a long time.

I was so panicked I forgot to breathe

When The River Was Deep...

It has been a minute. I needed as much for a lot of reasons. The Good, The Bad and The Ugly all rolled into one until Good prevailed. As I sit here typing with tears in my eyes and a knot in my throat.

"Like a warrior that fights

And wins the battle
I know the taste of victory
Though I went through some nights
Consumed by the shadows

And was crippled emotionally
Somehow I made it through the heartace
I escaped
I found my way out of the darkness, kept my faith
Kept my faith

And the river was deep I didn't falter
When the mountain was high
I still believed
When the valley was low
It didn't stop me
I knew you were waiting

Knew you were waiting for me
With and endless desire
I kept on searching
Sure in time our eyes would meet
And like the bridge is on fire

The hurt is over
One touch and you set me free
I don't regret a single moment

Looking back...when I think of all those disappointments, I just laugh.

I just laugh!!!"

-Aretha Franklin and George Michael "i knew you were waiting for me"

Jason is taking his meds by mouth.

The G tube will be out soon.

Jason wants to come home.

Aretha Franklin and George Michael sang a song that sums up every emotion right now:

"I knew you were waiting for me..."

I trusted God when my son was unrecognizable. I refused to "trust what I see" and I trusted in God.

I trusted what I believed. I believe in HIM.

When the valley was low. He didn't falter. Neither did I.

When the mountain was high, I still believed.

I always knew in my heart of hearts. My son, the boy I raised, the boy who just text me if I could bring him some milk- "was waiting for me..."