JTOP gets a Shoutout

Wash had a tough week. He was very much himself, which can sometimes be painful for me; he knows how far gone he is, how much he has lost.

The up side to that is he was feeling in control enough to finally go see "Brave" tonight.

It was lovely. We went with a college friend of mine and got to catch up with her for a while after the movie too. We might start meeting weekly to chat and catch up.

My morning was hard. I was crying a lot and trying not to sink into a real depression. Since Wash has been more "present" he asks me a lot of things that make him sad; and me too.

It was a wonderful blessing to get to go out tonight.

We had a packed small theatre, but the kids were pretty well behaved. More so, the parents were super attentive to their children and kept them quiet and were very careful to not interrupt or disturb the other patrons when they had their 6-8 potty breaks. There was even a baby; but ze slept through almost everything and when ze whined a little bit, zher mum took zher right out so as not to disturb anyone else.

Perfect way to do it.

Wash was dancing in his seat the whole movie through. He bumped my broken toe a couple times on accident, but I just dealt with it.

The good part for me was the way he would reach over to hold my hand during the movie. The way he squeezed it at the few scary/dramatic scenes. His smile at the end of it. Then, the best part; during the credits (of course we stay for the Easter Egg!) Wash spotted the name of a Pixar worker he knew and acted with back from the bay area. Apparently, he also had his nickname in the credits, which made Wash literally stand out of his seat and "Whoop" in joy for his friends' success.

That's the kind of person Wash is; he cares and he loves and enjoys seeing his friends and family succeed and be happy.

We came home and saw some friends sent him 2 more LEGO sets. Now he has some Ewoks! He really does adore those blocks, and they do seem to help his cognition. Double happiness.

I started my day with 90s music, good comedy, and Phil Hartman to stop my tears.

I'm ending my night with bagpipes echoing around me, a huge smile on the face of the man I love, and a feeling of love and friendship in my heart.

Hope comes in many different forms to me.

I'm starting to feel some again.

Bell, Book, Candle

Days sometimes begin to blend together. Wash is still on a late night schedule, so when I wake at 6am, after getting down around 3am, it makes for some long hard days.

He had a shit fit this week over the way he sleeps; we've been to specialists and his doctors who have all told him with his brain issues he needs to sleep with his head up higher than his body. This does not suit Wash well at all; he prefers to have his head as flat down as possible and his legs left up- pushing all the blood and excess fluid into his head.

So, he had a HUGE shit-fest about it on Wednesday- even pulled the "If I can't sleep like I want to, why should I be alive?" card. So, after making a plan with his Hospice nurse- because I remember his side effects even if he does not, we all said, "Sure, Wash, sleep how ever you want to." decided to test it out for a few days.

He looked like a chipmunk. His face, his eyes; they were so swollen. He had horrid headaches and light sensitivity. He also had a complete memory black out; whereas he normally is not aware he's missed something or forgotten, with this, he knew something had happened- but could not remember ANYTHING for the first hour he woke up. That scared him so bad he's gone back to sleeping how the doctors tell him.

I'm sad he had to learn the painful way, but with his memory issues, he just doesn't TRUST me all the time, even when I tell him I'm trying to save him physical pain. I don't know how long he will remember this most recent episode, but it's been about 3 days since and he's not make a fuss over sleeping upright yet.

We both had a talk with his folks on Sat; I spent about 30 mins in the morning going over with them how he is, how the week went, the bad issues. I pulled up Skype for him a bit later in the evening for him to talk to them. Lately he has been having some speaking issues; he mumbles a lot, speaks softly, and says things under his breath he is unaware of. So, talking on the phone for him can sometimes be a challenge for others to really understand him. Again, I think since I'm always around him I don't notice it as much until someone points it out to me; but he does mumble a lot more now and it's harder, I can tell, for him to find the right words, and get them out.

I'm starting to feel a lot more numb. I wonder if it's my own way of preparing for what is to come. I have to take things one day at a time, it's just too hard and complicated to try and have a future more than 7 days in advance, 30 months of terminal cancer has just done that to me. He doesn't understand time at all, it all comes back down to/on me.

At least lately I've found a bunch of good (some old) action and adventure movies for us to watch. It lets him laugh, or forget his issues. It's been nice to hear him laugh lately, he does it less and less.

I hate, I hurt to watch who he is slowly draining away from him.

Brain Cancer just drains away the man I love.

Frak cancer.

//Hospice Helper P. is coming over this afternoon to play with Wash for a bit and help him make some cardboard eclipse viewers (on the off chance we might be able to see it this sundown). Wash loves shit like this, but he's not been able to remember it. I'm hoping we can see it in AZ where we are; likely this is his last chance in his life to see a solar eclipse.

His Highness

My cat is my baby. And is hilarious; a 2 year old juvie Maine Coon.
Laughing my butt off right now; Leto is trying SO HARD to flip the light-switch in the hallway. He's tried jumping straight up, and leaning over from the fan to reach it; and falling off the fan every time. The most entertaining part is the switch is down, so even though he can reach the panel, he can't switch it to "up"!