out of the norm

Have you ever scrolled down the computer screen to fast and the perfect picture became nothing but colored streaks down the screen? Its like it all made sense and then something distorted the screen and it isn't at all what it should have been. Thats a funny way of saying how I feel about my world at this point. I have had some amazing moments of clarity in the last year. Maybe I've forgotten what its like to roll with the punches because there hasn't seemed to be any breaks between them. I have so much to be thankful for but wow I sure could use a break. I think its high time to forget about how people think I should be living my life. To finish off this short little post ...karma is a bitch! I have had to eat some in the last few months... but its ok..

inspiration

more decisions

Today we had an appointment with Alex's neurologist. Over the years we have exhausted nearly every medication available and every treatment out there. For some reason I cannot possibly begin to understand, Alex has been resistant to the majority of these drugs. His vagus nerve stimulator has been helpful , but not the cure all. So today his neurologist was very blunt , he increased the strength of his stimulator and gave us 2 weeks to decide the next step. There are some other medications to try but with serious side effects such as liver failure and bone marrow complications. Wow, don't even want to think about those. If you look at the flip side of the coin, what is and will his quality of life be like when he is having seizures several times a day? His doctor suggested seeing another specialist out of Cleveland for a second opinion to make sure we have gone down every road possible. That's a lot to chew on. I don't understand how its possible that there isn't a single medication out there to zap these seizures. so again I'm just frustrated... I just want an answer ... a fix it.

promising signs

This is an excellent sign that summer is on the way! Our first roasting of the Hot Dog happened this past weekend at Candys house! What better way to celebrate this wonderful weather then with some fire roasted hot dogs and smores ;o)

The little things..

My taste of heaven

Most everyone knows that music is not just a "like" for me, its a passion. There is pretty much nothing I do without music playing in the background, or blasting :o) I like it all, I'm not opposed to listening to anything ... with the exception of the heavy screaming metal death bands. My likes cross over every genre out there! Having said all that, I am a concert virgin of sorts. The only concerts I have been to are Pink Floyd in '93 ( I didn't even know who they were, I just went with Doug for kicks ) , and Maroon 5 several years ago . Its not that I haven't wanted to ... just had a few things I had to overcome! Soooo... Alex informed me that John Mayer would be in Columbus March 12. There is no one, nothing, that I like better then John Mayer. I don't care about his reputation . His music is positively amazing. Its not just music. Its like he crawled into my heart and wrote the story from it.

My friend Nikki and were just speechless at the incredible concert he put on. We lost count , but it was somewhere in the neighborhood of 20 songs on his setlist. The opening act was Spearhead, which I was surprised I liked as much as I did. Anyways, in my virgin concert ways , it never occurred to me they served alcohol there. So I only took in my camera and some dollars. Low and behold they wouldn't sell me alcohol without my ID. AHHH come on people... mid thirties girl here! So the girl next to us and her boyfriend offered to fetch us drinks using their ID. Is that illegal?! lol

Those Long Island Ice Teas go down pretty quick! phew! nuff said!

I have actual video of the concert, but alas, I seem to be singing with John Mayer.....soooo.. I won't be sharing that footage! Today my heart is still singing...

Happy Birthday To My Dad!!

Happy Birthday to my dad! My friend Candy and I built him this special butt hut for work! This should keep him out of the inclement weather ;o)

Ramblings

This week hasn't been very nice to us. I will never stop wondering why we can't cure epilepsy. Its like a hideous invisible visitor that shows up at any time. I've worked for the last 11 years to look on the "bright side" to see all the positives . I feel like a horrible person , as if I don't appreciate all the blessings; I am overwhelmed with sadness. I realize that over a million people suffer with epilepsy. I wonder why so many people can control the symptoms but it seems impossible to keep Alex's under control. It drives me to question every piece of food that goes into his mouth, every minute of sleep he gets, every ounce of stress he feels.. I question it all. I desperately search for the answers , anything that would help lessen the attacks.
My natural instinct is to be a "fixer" when something is wrong, I want to fix it. This is something I can't seem to fix and its making me crazy. I'm going to be honest , when I had babies , I would dream of all the wonderful things in their future. When something threatens to take away those hopes and dreams it brings out the ugly in me. I don't like it, its not who I am. Alex has actually started apologizing "mom I'm sorry for having a seizure" . Really? have I created that sense in him? have I made him feel personally responsible for something he has no control over. Today is Thursday, he hasn't made it to school at all this week. His muscles are so incredibly sore from seizing and his mind is tired.
Alex has had seizures for the last 11 years of his life. I still cannot describe the fear that grips me when I see him slip into one. I can't describe the gut wrenching helplessness that overtakes my whole being. I know I'm not paying attention to Andy and Aaron the way I should be. My mind is waiting and pacing for the next seizure to show up with Alex.
Today I'm mad. Today I feel ugly inside. Today is not a good day.