You Have No Idea What You Can Do For OThers

This is the Star of Daredevil the TV Show with Jason. Jason has been ridiculously happy all day...Thank you so much!

Radio Silent

On the 1 year anniversary of something you usually celebrate. When you think of an anniversary you imagine there should be some sort of joy. Right? Yesterday I preferred radio silence. I didn't post because I was searching for Zen and absorbing life as it is now. Jason text me and he facetimed and I had to end the calls quickly because he is so much like "MY Jason" that I want to burst into tears and wail. He is playing Xbox and asking for money, and asking for clothes and doing every pain in the ass thing Jason circa 2015 did before he got sick. Yet in my mind's eye Jason all plugged up in ICU was just yesterday and I am afraid. I am afraid to accept this and be happy because what if I wake up and it isn't real?

So I am doing what I know how. Walking dead style. Getting up and doing what is expected of me. Not really knowing how, but understanding why. Work, babies, school, home and taking it one day at a time. Being a consistent drone about real life. The only way to live right now is to be   For lack of a better term: mechanical. Maybe one day this NEW normal will be normal and the shock of acceptance will have faded away and I will just live and love my old/new Jason.

It's really all I can do right now. It's all I can handle.

Close To The Vest

The tears can't come anymore. It is almost like the faucet broke. The emotion is so deep it starts with a rumble deep within that culminates into a shake. My heart goes off beat, that's how strong the vibration is. My eyes can't focus. The rumble is too close to my ears. I read Dr. Vargas' s note and my eyes glazed over. I was blinded for a moment.

Tomorrow makes 1 year since this started. 1 whole fucking year. A year not being able to breathe. A year of drowning. A year of begging and pleading. A year of tests and scuffles. A year of blood. A year of sweat. A year of tears. On the 3 Hundredth and Sixty Fourth Day God loosened his grip on my throat and let me breathe. The air filled my lungs as if for the first time in my life, filling every pocket, every bubble. Giving me a relief so powerful I can only shake. She gave me news, I have waited to hear for Three Hundred and Sixty Four Days. News they always promised me would come but never came. News that has been close, but never, ever here...

Fantastic news 1 Day before the birth day of this fucking spawn of hell disease:

Jason's titers...

Jason's blood...

Jason's behavior are finally all in alignment.

Jason disease is on its way down. Lower than it has ever been. Jason is getting better.

The Cosmos And All Its Wonder

There is so much I don't say. As I put the book together I wonder if that is the place to release it or not. Jason has the lowest levels he has had since the disease started. He's pseudo Jason still, not quite Jason circa pre Oct 18, 2015 not exactly Bizzarro Jason of July 2016. Instead he is this calmer and gentler Jason that is trying really hard to get back to normal.

He is eating. Loving homemade meals and having helpings of seconds and thirds. Still with a Gtube in his stomach and taking meds that way. He finally stopped yanking it out. Finally not having too many cursing episodes and thankfully no hitting. The nurses were a little hesitant as some of the old rotated into new schedules with him but now they see. He can be given a little trust to stay human at the very least.

Thank you God for all of your Grace.these days I never thought I would see. My heartfelt gratitude for all those who have prayed for this time to come.

The Beatings Will Continue Until Moral Improves

I remember the heading of this post from a vacation I took. I always thought that's where my parents got it from. Now I think maybe that should be the NMDARE moral. We are back for round 2 of Retuximab. We will continue with chemo until the disease is beaten back into submission. This time it was in an infusion center. Everything about this visit went so smoothly I still think I dreamed it. We got their by ambulance, was put in a small private room, got the transfusion and left. No incident. Jason was calm the entire time. I ordered him His favorite Spanish food and I got him a special treat. He asked for a haircut and coincidently my hairdresser is in the neighborhood. I made a phone call and got a local barber to come to the hospital and give Jason a fresh haircut. He looked amazing.Thank you God for all of your blessings. Please I beg you to allow them to continue.