the ride continues

The last few days have been incredibly up and down. We have reached summit of the coaster hills and plummeted to the bottom, then back up again. I feel like right now we are at the boring part of the roller coaster where you think must either end shortly or you are soon to be surprised with a hidden leg of excitement - maybe a loop or hill or a plunge. Who knows?


Plummeting:
Brian remembers NOTHING of what happened on Saturday night at Alexander's Steak House. He remembers nothing up to Monday morning and even that is sketchy. He is extremely frustrated with me and anyone else who thinks that he should take precautions or stay put. This is largely because at the most difficult moments of Brian's condition so far, he remembers NONE of them. He does not remember how bad he was in November just before he had surgery to install his shunt. He does not remember mid-January when he was unable to walk and forgetting everything before we discovered the tumor had progressed. And today, he does not remember what happened Saturday night and Sunday- how he was up all night and all the nonsense things he said like how he was going to request a change in management when I refused him a drink or how he was petting me on the head like a dog and he said at least he didn't call me a bitch when I asked if he was stroking my hair or petting me.

It is gone from his memory as are a lot of other short term things. He can't remember hour to hour if he took his medication. He can't remember moment to moment where I am heading or where the boys are if they aren't in the room. He looks for me all the time and constantly asks where I am. He didn't remember that Mom was here this morning when he woke. He doesn't remember whether or not he ate. And many other examples. He remembers long term things pretty well, though.

Summit:
He is able to move and walk a bit better. He is conversational and involved. His vitals are good. We slept in our bed last night and the hospital bed remains empty except for the kids when they play in it. He showered on his own last night as I stood by and watched. He is ascending and descending the stairs. He does not use the wheelchair, either.

Plummeting:
With his stability issues and the understanding that things can turn so quickly, I am insistent that he not walk around unless someone is close by him and that he not descend stairs unless a strong man is in front of him. He is not accepting this very well. He is not treating me very kindly saying some pretty harsh things, taking an incredibly sarcastic and defensive yet accusing tone. I know it is not the Brian I know speaking, but it is difficult nonetheless.

Summit:
Brian is very aware of his need for his medication. This has been such a part of his regular routine for 12 years that he cannot think without being engrossed with taking his medication.

Plummeting:
Brian does not remember if he took his meds. He thinks he took them, then he thinks he needs to take them - moment to moment. I hid all his bottles of medication and assured him I would be responsible for getting his right meds at the right time. He is not nice about it. I am developing some thick skin because I know this is what is safe for Brian.

Summit:
The boys went to school yesterday to Daddy sleeping in a hospital bed in the living room. When they arrived home, he was able to walk and lounge in the La-z-boy watching TV.

Plummeting:
I opened Gavin's backpack to find a card for Daddy that he had made at school because he had wanted to come home and see his Dad afraid he may die while Gavin was at school. His wonderful teacher had encouraged him to express his feelings on a card and share them with Daddy when we got home. The card had Dad written on it no less than 15 times. It made me proud and broke my heart at the same time. I had a conversation with Gavin that if I thought Daddy was getting close to dying while Gavin was at school, I would come get him. I cannot even believe my 7 year old has such a heavy burden on himself as he is learning that "igh" makes a long "I" sound.

Summit:
Yesterday, Grant had two great-aunts and his Memaw here to distract him and spoil him. He got some Spotted Cow Ice cream - one of our favorites and Taco Bell - his first time, but he loved it.

Plummeting:
Yesterday, I felt like crap. I had nausea and ahem, other, issues that plagued me for about 24 hours.

Summit:
I had plenty of relatives here to help yesterday.

Plummeting:
Today, my mom (Memaw) feels like crap.

Summit:
Today, I feel great.

Both:
If I think this is confusing for me, imagine how it is for the boys. Gavin came home to find Brian out of his hospital bed and walking around and asked me, "he is still going die, though, right?" Grant looked over at Brian watching TV and said, "it looks like Daddy is dead in that chair with his mouth open and not moving." These are some of the normal statements spoken in our house. It is like we all have to convince ourselves that this is real because we realize moment to moment things can change so drastically. We have to keep ourselves guarded and prepared. They are watching AirBud on the big screen as I write this. Moments ago, Grant was telling me to cry in his shirt. I explained I didn't need to cry right now. He said that I should cry because of Daddy. I explained that sometimes I feel like crying and sometimes I don't. He can cry to me and in my shirt any time he wants. Sometimes he will feel like crying. Sometimes he won't. I don't understand my own emotions and my own valleys and hilltops. To get them to understand is a whole other issue.

My boys are confused about sickness. They think sickness is the reason you give if you don't feel like doing something. If Daddy misses a game, it is because he is too sick to come. If Daddy doesn't eat, it is because he is sick. If Daddy sleeps late, it is because he is sick. And those things are true because Daddy doesn't want to sleep late or miss their games or be unable to stomach food. Daddy misses those things only if he is too sick to do them. They think they have to say they are sick if they don't feel like going to a game or if they don't want to eat. They are both constantly saying they are sick. I try to make sickness be something they DON'T want to be by saying things like, "that's too bad because if you were feeling good we could play this game instead of (whatever), but now that you are sick, you will need your rest instead." Things like that. Still, sickness is confusing in this house. As are lots of things.

Some days, as terrible as this may sound, it would just be easier if Brian consistently felt awful.

But that's not how I want him.

KEEP BELIEVING