Happiest Place on Earth

Those of you that know Catie know that these days she doesn't get many words out.. mostly just "mom/dad" and "mm hmm" or a strong "yes" or "no" depending on what you are asking her.. With that you could see why it was such a shock when she managed to get this out a few weeks ago, "da-dad. dizland dad, o-kay?" She has wanted to go back for so long now and I guess she was fed up with being told "some day cate.." and she was gonna make sure she got there so she spit out that sentence in the middle of dinner and thats all it took for dad to figure out how to get us on our way. We are even going as a whole family! Of course all of us kids wanted to be a part of her last trip to her favorite place on earth and my parents were given some gifts by some sweet people to help out and thats made it possible for us to go. We'll just be in the park for one day, tuesday. All she needs or really can handle. I'll be honest, I'm not sure how I feel about it. I don't think any of us are. Dad of course crys when he thinks about stopping for gas half way there let alone thinking about the whole trip. I do to though. I cry when I think about leaving that day. Knowing we'll be back before we know it with baby Joey but Auntie Catie won't be able to come along. The only thing at this point that stops the tears and puts a smile on my face is the thought that its Nonnies last trip to disneyland too. I tell it like it is and thats just the plain truth. Aaaanyway, I'm not sure what to expect other then some crying parents and a happy Catie? I don't know if it will be awesome or horrible. I don't know if she'll even be awake that day.. she could have seizures and pass out all day and not even know we are there.. on the other hand, she could have one of the clearest days of her recent life.. We'll have to wait and see...

Heres to hoping she has the best day of her life..

oh and that I don't get mistaken for a float in the parade with my swollen feet..


..to be continued...

A Big Day

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.

The Dirt on Pregnancy

actually, maybe this blog should be titled the 'dirt on anemia' instead?

wanna know something NUTS? this picture of dirt makes my mouth water. Crazy right? buuut I found out that its extremely common for pregnant women to crave dirt, especially when they are anemic like I just found out I am. Talk about a bum out. The one thing you crave like a maniac and its not edible. go figure...

In other news, we got a cat. I think he's satans brother. oh and Tonys leaving for tour again.. I'm not feeling so great about it this time. Call it the hormones but I have been priittty emotional over it lately..

I think thats it.

ciao