Its flipping hot outside
We had these great plans for today but we realized Edaville is closed this weekend (they close?) and that it was ridiculously hot outside. We stayed home all day Sunday except for the excursion that John made to Home Depot. I don’t do well in the heat and neither do the 4 kiddos. John says it doesn’t bother him, you know since he grew up in Texas and all, but I don’t buy it for a second. He definitely hates the heat, too. I’m sure he’ll reply to this entry and deny it but BELIEVE ME he hates it. LOL
Julie’s ability to understand thing is really amazing to me. She still has the occasional meltdown but when we are at home she functions like a 12 year old. Totally self sufficient, stays out of trouble and leaves the other 3 kiddos alone and just understands so much. She gets that Rachel needs some extra help. She knows not to take it personally when Rachel says or does something that is less than wonderful. I am so lucky to have her as a daughter and a friend and I don’t think I give her enough credit.
I am on a mission to have a lot of our digital photographs printed for both some new photo albums I am working on as well as enlarged for mats and frames to be put on the wall. This place is actually starting to look lived in! Unfortunately it can be really depressing trying to organize your photos and know that at some point down the road that one of the main actresses in our play will leave our acting company. I have come up with a few albums so far.
Kat / Rachel (pre John)
Kat, John, Rachel, Wedding, Newborn Julie
Colorado (basically Julie’s 1st birthday, London’s pregnancy, birth, and the first year)
Massachusetts before diagnosis
July 2009 – December 31, 2009
2010 (and so on)…
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.
I can handle the heat…just don’t like it. I also am not afraid of heights….just don’t like them.
LOL You two are too funny!!
I think having those albums will be what keeps the memories alive. You have to be able to remember the good times and cherish those memories. I know its hard, or maybe I don’t. I couldn’t imagine going through what you are, but I do know that I am here for you if you need to talk, anytime. I always have my cel with me. (((HUGS)))) Love ya!!