Cheery on the outside, throwing up on the inside.

Lately, I hate going to bed. When the house is quiet, the tears start flowing. I lay in bed every night and pretty much cry from a combination of pure exhaustion and the fear the unknown for my baby boy. There are so many unknowns that are uncontrollable, and obviously out of my protective hands.

Milo is up to 5 1/2 pills a day and we are still seeing seizures. I see at least 2 seizures a day...and that is just what I see. Everything I have read about LGS, most seizure activity happens when he is sleeping. What the fuck are these doing to his brain? Is LGS worse than Infantile Spasms? I thought we were in the clear when the doctors told us he had outgrown Infantile Spasms.  LGS actually sounds worse and I didn't think that was possible...."hard to treat", "short life expectancy", "behavior and emotional issues", "mental retardation"....these words run through my brain like a ticker tape that wont shut off.

During the daytime hours, I'm consumed by my work at the J, taking Milo to his various weekly therapy appts., volunteering at Sam's school, planning upcoming Milo Gray Guild events...and just everyday busy life of being a mom to Sam and Milo. But once the kids are fed, bathed, and put to bed, my life slows down a little bit and I open up my laptop. I escape to Facebook to step out of my life and stalk into others :) I love keeping up with friends and their lives...I guess in way it makes me forget the nightmare we are going through for a brief time. The laptop closes and as soon as my head hits the pillow, my mind starts to race and before I know it, I'm crying the ugly cry.

The fear of the unknown hits me hard as I try to close and my eyes and catch some much-needed sleep. I start thinking about Milo's future and what that might look like. Then my mind goes a different direction for a few and I pray for my dad who is living with Alzheimer's and Parkinson's and the fact that he is only 61 and he isn't going to remember who we are in the near future. Then my mind goes in yet a different direction and I think about my 93 year old beloved grandmother, who is my best friend and I used to talk daily with,  now sleeps through my visits. The tears flow until I'm completely out of energy and can't muster up another ounce of energy for one more tear. I fall asleep and wake up the next morning to begin another day.

Another day of cheery on the outside, throwing up on the inside.