October 20th 2009. A day I never imagined being the way it is. I used to think that October 20th 2009 would most likely be a sad one. Catie would be turning 20 but Juvenile Batten kids rarely turn 20 so I figured she wouldn't be here and it would be a dark sad day. Instead its here and its awesome.
Tomorrow Catie will be 20 years old, alive and happy. She will have overcome the "late teens" half of the juvenile batten disease life expectancy and be entering the "early twenties" half. What a gift! She has experienced many declines and is now a mumbler and hardly able to get out of bed or her chair but is still further ahead then what I could have ever imagined her being at this point. She is still the same happy kid full of smiles, hugs and laughs. Its hard to celebrate her 20th birthday because it only seems realistic to assume its her last, just like I assumed her 19th was her last and her 18th before that. I guess I have to always soak in the big moments and treat them as if they are the last even if I've been doing that for the last 8 years. My goal for tomorrow is to enjoy it so that if it is the last birthday she celebrates with us I can make sure I remember it as the best birthday she celebrated with us. Its bittersweet. Its reality. Its here, her 20th Birthday!! Happy Birthday Caca Butt!!!
Another thing that is going on tomorrow that I never saw coming for October 20th 2009 is the CD release of This Time Next Years Road Maps and Heart Attacks. My brothers band recorded their first full length this February and it will be hitting the shelves tomorrow. It blows my mind! My big brother has been playing music since he was a little kid and in some kind of band since he was a young teenager.. Now he's on tour with his closest friends, meeting new friends, seeing the US and soon Japan all while playing music. Doing what he loves, living the dream! I can't tell you how often I think about him being gone and ask myself what my dream is? Rarely do people know their dream let alone be able to live it and that is what he is able to do. Tomorrow, I will be able to go to Best Buy and purchase a cd with my brothers name and picture on it that has some of his lyrics in it and obviously alot of his musical talent and ideas. Trust me, the cashier will definitely know whats up as I hand him my money.. He may not care who my brother is, but he will know by the time I leave. :)
So much for a sad dark day huh?? more like wow, Catie is still here, Tony is a rock star and I get to watch it all happen... Its gonna be a good day folks, a very good day.