Life as we know it

It seems like February creeps up so quickly every year. It means we are closer to Spring and warm weather, we did our 65 Roses Fundraiser, Valentine's Day, and Rare Disease Day is Saturday Feb 28th this year. I never knew what a rare disease was, and I say this not proudly, but nor did I care a few years ago. I was in a, "life is perfect, life is beautiful, nothing bad ever happens" type of world. I wish someone would have informed me about some rare diseases, how to learn about them, how to bring or raise awareness for them, and how to support someone who was going through something like this. But, no one did. So I'm going to be that person, and inform you, and probably tell you more than you want to know, but knowledge is power, and maybe by sharing some of these things with you that you may not know, you will one day be able to help someone. Or even be there for someone. Rare diseases suck. They suck because with 90% of them, you will hear the word fatal. Fatal me...

After our few recent Hospital stays with Zoie because of seizures, and med changes, we were hoping for a week span between seizures. We made it four days and she had one today. Not a bad one, more because she was exhausted from waking up at 5:45 by her choice and not letting her brain settle down enough to nap. At the time, I get frustrated, mad, and loose patience from these dam things, but after hours of Parenthood, and cuddles all afternoon from my girls, I said to myself, "at least they stopped, weren't in her sleep, and we went four days without any :) I have to pull the good out of each day, or lots of days would stink. So now we keep waiting for the new meds to take full effect, pray and wait for the red card. One step at a time. Even with seizures we had a fantastic day. We delivered Valentines to all Zoie's little friends, I got my yummy iced coffee because I'm always tired now days, we went through all the 12-18 month summer clothes that soon my little Ives ...