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.