The Bucket List
So if you follow Rachel’s facebook page or know me “in real life” you’ll probably know that the idea of a Bucket List has been the topic of several conversations between me and the kiddos. They don’t understand that this has ANYTHING to do with death so please don’t comment or email me worried that I have a doom and gloom attitude that is negatively affecting them. My positivity is borderline disgusting. LOL
I’ve put “The Bucket List” on the top right of the blog and plan to add many, many more things to the list as the weeks go by. The plan is to take a very long (nearly) cross country trip stretching from Boston up north to Maine and all the way West to Kansas City then Colorado and back. We have free access to several amusement parks through September and I’d like to take advantage of this gift from “Give Kids the World” (the place we stayed in Florida on our Make A Wish trip).
I’m also setting up a FLICKR account to link our pictures from all of these successful missions to show the world that life is too short to wait on the important things in life. Life is too short, people. It’s a fact. Batten Disease is such a shit disease, I refuse to let it steal my Rachel until she has had the chance to use up her body and slides into home base covered in fattening food and exhausted from life.
The more afternoons I can get my children sticky with ice cream this summer, the better! I’ll leave you with a picture from Summer 2009 (the extra 9 year old boy in the picture is my nephew Ryan).
You keep that thumb in the up position, baby. Hold on tight because I’m going to drag you all over this country!!! 
For the unaware, “The Bucket List” was a movie that came out in 2007. < link to IMDB>
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
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Wow, I know you’re probably sick of hearing it but you’re an amazing person, Kat. Those babies are lucky to have you. I love the idea of a Bucket List and I hope you all get to tick through the list as it grows and grows! :adore
Ok trying again, seems to work here, but when I tried tuping before as soon as I clicked in the text box it redirected me. WIll try on Safari tonight.
As for what I was saying…
That is a great list, but I think you need to add go to Mexico, Vegas, etc with my bff’s Melissa and Jamie.
Love you!
This morning she had 3 eggs sunny side up. She and I discussed the joy of eating the yolks in one bite yesterday. She is hooked.
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testing from home…seems to work now
I so totally agree with Melissa! You better add us to your bucket list (I’m currently too busy to write my own and yes-you make me feel horribly guilty for not devoting more time and for putting everyone on hold until November when I graduate so I’m going to live vicariously through you!) Love you guys! I’m so glad CO is on your list!!!!
What the heck? That’s not my icon it posted and where in the world did my reply go? Hmmmm
Sure now it posts but where did my first one go? LOL
Way cool, Kat, way cool. Just perfect!
I have a bucket list too! I am currently planning a “Vuja De” for my 40th birthday. Doing 12 things on my list that I have never done before!! You can see my itinerary here: http://mslistologist.com/?p=852