I call bullsh*t

You know that saying, "God only gives you what you can handle"...I call bullshit. He needs to stop trusting me so much. Enough already!  How about a clear EEG? I could handle that. Or how about only a dozen meltdowns a day instead of three? Or maybe only one pill a day instead of 6 big ones that I have to crush and hide in juice and food ALL DAY long? These are things I can handle. And while we are at it, a little less pressure at work would  be nice right about now. Cheese and rice!

out of my control

I can always tell when Milo is having a seizure. He sits down next to me and is very still and quiet. When he catches me looking at him, he pushes my face away and say's "no, no". Milo doesn't want me to watch. He is fully aware that something is happening. I ask, "Milo, are you ok?" he replies, "no, no." He remains still with his mouth open just slightly, his eyes are looking around, and then all of a sudden his face moves, almost as if someone is pulling his face back. It's hard to describe other than it's a subtle facial movement. This staring/face movement will typically last about a minute and then he is back to himself. The seizures don't seem to hurt him, but he is old enough now to understand when an episode is coming on and when it is actually happening. All I can do is put my arms around him and comfort him and let him know how much I love him and it will be ok. I wish I could believe my own words.

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.

Fat lips are in.

A head-butt to the mouth started off the day followed by countless slaps, pinches, kicks, scratches, hair yanks and a bite to the back of my thigh....and that was just today. But for every fat lip or bruise, there are equal amounts of kisses, hugs, and loves from my sweet boy.

Milo cannot communicate with words, so sometimes a pinch to my arm is all he knows what to do to gain my attention. It bloody hurts and sometimes a tear wells up in my eye (the bite to the back of my thigh had me wimpering like a baby), but I know Milo is frustrated that he cannot use words to ask me what he wants. He isn't pinching to be malicious or to cause pain. You would kick and  pull hair too if you had an abnormal brain wave pattern.

We just found out today that Milo will start seeing Rosemary White, an amazing pediatric behavioral and occupational therapist on a weekly basis. Milo participated in Rosemary's six-week summer camp and we saw a dramatic improvement in this "aggresive" behavior. I can't wait to learn from Rosemary. We might have to rob a bank to learn from her, but her expertise and knowledge of how Milo's brain works is worth every penny.

I love Milo's hugs and kisses, but the day Milo uses his voice and says to me, "Mommy, I love you", is the day I will cry out of joy and not pain.

How does a Jewish boy become a Christmas tree?

Well, if you are a courageous patient at Seattle Children's, you might be asked to have your face and story next to one of the beautiful trees on display for the public to bid on. 20 gorgeous trees are on display (Nov 21-Dec1) at the Olympic Fairmont Hotel's lobby. Milo's tree has already sold before it is even unveiled to the public! These are not your typical Charlie Brown trees, these are works of art valued at $2500 a piece! Milo's sold for $4,000! I will take two, please. All money raised benefits the uncompensated care program at Children's.

We will be heading down to see Milo's tree, and the other trees, this Sunday at the unveiling party at the hotel. I told Sam that Santa is going to be at the hotel and he told me he doesn't trust Santa because "he only brings toys to un-Jewish kids". Good point, Sam. Now go get your picture taken in front of your Christmas tree brother!

www.seattlefestivaloftrees.com
Milo's tree is "simple elegance"

Blink and you will miss the seizure

Last week, as we sat listening to two neurologists tell us about Milo's "condition", I couldn't help but be distracted. I wasn't distracted by Milo turning the lights off and on and pushing all the buttons in the room. I wasn't distracted by Sam drawing farting ghosts on the white board. I was distracted by one of the doctors blinking. Every word was said with a blink. Blink. Blink. Blinkity-Blink Blink. Jesus, do something about that blink! Milo has *blink* Lennox-Gastaut Syndrome *blink*. 

To top off his blinking syndrome, he looked EXACTLY like the Mr. Chow from the Hangover. Toodle-oo, Mother f*ckers! 

With that, Milo went off for an EKG on his heart. I'm so glad last week is over. *blink*

Laughter is interrupted by tears

My son, Milo, had an EEG today and we are awaiting the results. Every time the phone rings, I hide under the covers. Don't call me, I wont answer.

I'm freaking out. I'm nervous. I'm scared. I'm pissed off. .

Could someone please tell me why my sweet Milo is going through all of this?

Please say a prayer for my little angel.