Thursday, January 7, 2010


Craziest Roller Coaster Ride of my life yet. So crazy that I literally had that feeling where youre gonna puke and its stuck in your throat and you fight to keep it there so it doesnt make its way out.. gross, I know, but at least I'm not talking about c-diff.. my newest obtained medical info. Now thats some nasty crap.. literally.

This last week my family came closer than ever before to losing Catie-Nana. You could imagine the relief that was felt as she sat in her cozy green chair last night with her new blanket that she had explained was from her friend Sandy. The best feeling was when she asked for pizza for dinner.. like nothing had ever happened.

At one point in the hospital my dad put his arm around me and asked if I was ready for this..anybody that knows me could answer that one.. he went on to explain that he could be ready in two years..knowing that he will never be ready I realized how desperate we all were for more time. Someone had made the comment that we should be ready since we have known this was coming for years... how ignorant. Thats one thing that is always brought to my attention in these situations.. sucky people. I'm not even going to sugar coat it cause I dont sugar coat anything but cookies and cupcakes. To be honest though, I have never been more disapointed and more encouraged at the same time in my life by people. We all know how I always see the negative first and then have to make myself chill out and look for all the positive... thats why at the end of day one in the hospital I had even thought to make a visitor tally.Thats also why in all my blogs I start off in biotch mode and end with happy thankful mode. So here we go..
Can I just ask a question?
Where the hell was our family through all of this? At the closest possible time of Caties death where were her cousins, aunts and uncles? She had 3 family members visit her and that number would have been 8 had it not been for a surgery, a temp of 103 and possible pneumonia. But why wasnt the number of family members coming to give Catie their love and my parents some support over 30+? If I could just be given a reason maybe I wouldnt be so frustrated.. is our family tired of hearing about it? is she old news? I dont get it.. if she hadn't come home what would they have told me at her service that I could believe to be genuine? I can't believe that no one knew how serious it was since all of our friends new without even being given details..

now for the happy stuff..
All of the lack of interest/concern from family toward the situation was a good thing because it showed me who our real family is. Our friends. Not my friends that I've grown up with over the years.. graduated kindergarten, junior high and highschool with (and please don't tell me you didn't know about it cause we all live our lives on fb) I'm talking about everyone else.. The 50+ people that came to visit Catie and bring food and cards to my parents.. the friends that just came and sat next to Catie.. the friends that brought dinners to my siblings and made themselves available for worst case scenarios.. the friends that came and prayed over my parents and Catie multiple times. The friends that blew my phone up with text messages even when they themselves were sick and in and out of the doctors..

I know it shouldn't matter because I know everyone cares about Catie, our family included and the love, encouragement and support from so many friends should be enough. I really don't think some people realize how much support helps get through a situation like this. How much it means when people take the time out of their life to stop and pay a visit. Stop and make a phone call. I mean, if you can call when you're half way across the U.S. in a blizzard and a freezing cold mini van, I'd like to think you sure as hell could call from solano county, the bay area or sacramento.

I always read my moms emails that she sends out.. (yeah, the whole thing tony haha) and I'm amazed. I don't know how my parents stay so positive. Just another reason I look up to them so much. But just because 99.9% of the time they are positive doesn't mean that they aren't hurt for the same reasons I am. Its just life I guess... Its just me throwing myself a pity party like usual and not knowing how to grieve without getting mad at everyone thats not there for me or my family instead of getting mad at batten disease. I'm the only one that can get rid of the bitter half of my blogs and the bitter half of my thoughts and feelings..

I love how I have to type a novel to realize this stuff.

Anyway.. these things really do make me feel like I'll puke everywhere.. but then things calm down and I find myself sitting in the same room as Catie at home and I'm fine again.. I have more time to spend with her and try and figure out how to handle everything the next time around... oi.. Lets hope its not for a long time...

Now that all that steam has been let off..


Anonymous said...

I get google alerts for "Batten Disease" in my email and it sent me this blog. My son was diagnosed with Juvenile NCL in 2008. I have started a website to support awareness at please check it out one day.

What's my name again? said...

"if you can call when you're half way across the U.S. in a blizzard and a freezing cold mini van", I got your back girlfriend! May you never get used to the thought of losing your baby sister...I couldn't. I wouldn't, and that doens't make you a bad person at all!

On A Day Like Today said...

Reading your blog I feel so guilty about not coming to visit and letting you and Catie, your Mom and Dad, down like that. That's something I never want to do. Even my surgery seems like just a lame excuse when I read your heartfelt honest expression of how you feel. I feel so selfish, self-centered and thoughtless and punkass and like a terrible uncle, and that's someone I never want to be to any of you. I hope you know how much I love you and your whole family and Catie and Annie especially. It's weird but sometimes I feel like I could be intruding or be a nuisance. Now that I've read "Huuurl!" I get the reality. That's why I'm thanking you for writing this and being so honest, Kelly. And that's why I'm putting it in writing - so you can read it and know where I'm coming from as your uncle, your friend, and part of your family. I love you and I'm proud of you. We'll be up next weekend. I'm sure by then I'll be more ambulatory LOL xxoo J

Kelly Anne said...

Uncle J, you are far from a terrible Uncle.. surgery is a legit thing and we are glad you are recovering! xoxo