HATE

I know its a strong word and I usually dont use it (I dont even allow my kids or students to use it) but it is the only word that comes to mind to describe this anger and frustration I am feeling this evening. Havent felt it in awhile, since diagnosis nite and the following day. Hid it/stuffed it for a bit.

I hate...

• that we know the hospital like the back of our hands
• that the best nachos I have had in my life so far came from the hospital cafe nacho bar
• that we know so many familiar faces (and yet it's comforting at the same time)
• the words cancer and leukemia
• what this is doing to my family, my 4 boys and so many others
• that this situation has put people who could talk to us about anything in a position to not have any words to express to us-they are speechless and worried and do not know how to confront us and I dont blame them. I have been there in the past myself.
• that Grayson doesnt see Belmonte anymore
• towels on my couch, bed and cars bc I never know when G is gonna vomit
• watching G go from active w tired spurts to always tired w limited active spurts
• weeks ago watching him run around this house and now he cant even walk without support, we literally make him walk from here to there to ensure we are moving those muscles for him. He def does not want to. He is so achey and sore and weak all the time.
• hearing him whine when you make him sit anywhere else or do anything but lie or sit on the couch or bed. He is just so frail.
• that these medical terms have become part of our everyday vocabulary (even for Triston)
• that I have to wear chemical protective gloves ("the purple gloves") when I change MY OWN child's diaper. The chemo drugs are so potent it is for our safety. He even has a separate garbage can to toss them in. As soon as he sees us put them on he whines and screams the whole time we change him bc it reminds of the people in the hospital
• that I have 6 prescriptions in the cabinet with the words GRAYSON CACAL typed on the labels, he's not even two yrs old!
• watching the once abundant and exciting friendship between T n G take several steps backward in the past few weeks. Since G is not on the floor w him or in the play scene they dont bond like they used to. They are so separate from each other. It hurts to see this. They were so close. Now the limitations themselves limit their relationship. Believe me, it makes me grateful for the lil moments they still are able to continue. As if they figured out how to adapt-book reading, leapfrog n leap pad, movies, eating, and some of their silly jokes or lines are a constant. But oh how I miss them chasing each other around non-stop and zooming those trains all over my furniture. The things I used to yell at them about!
• that some of the new additions to T's home library include books about cancer and who is sick and so forth. He loves "Chemo to the Rescue" bc it is similar to a superhero background.
• that my parents are so far away. Sometimes I want to cuddle up with them and make it all go away, just as we do with our 3 boys on a nightly basis.
• that this is only the beginning of the fight. 29 days of treatment down....and who knows how many more to go

That is all I can think of for now...I know there will be more to come. Just needed to vent off my crabby mood.