Thursday night
MRI was a long day. She was, shall we say, very unhappy with me afterwards. I did run into someone I know on the radiology floor and it was unbelievably nice to see a familiar face in that building who doesn’t have MD after their name. Twas nice to see you, Mrs McG.
Julie is such a good sister and doesn’t deserve the abuse that seems to get a lot of recently. I don’t think there is a better sister out there for Rachel, Julie is so caring and compassionate. I’m not sure how she doesn’t internalize Rachel’s words and visuals but she keeps on going as if she has some deeper understanding. I probably don’t give her enough credit. I do and have for some time, whispered to Julie several times a day how great/kind/sweet/wonderful/helpful that she is.
Hopefully I will have the MRI results tomorrow. Our kitten, Texas, is being neutered in the morning and after I drop him off I go and meet with Rachel’s caseworker with the Commission of the Blind. I hope that meeting goes well and that she is friendly. I imagine that she’ll start reading this blog so I need to be careful in case she isn’t. 
Walking around knowing that your child has a disease with a 0% survival rate feels very much like a living nightmare. I don’t know how other parents move on and live with it but I will try and find out. Like I said, thinking that your child has a neuro-degenerative disease and getting confirmation are two totally different things. Sorry if this entry doesn’t flow and my words are screwy, I can barely stay awake and my mind isn’t working normally.
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.
Your words were just fine.
Your in my thoughts today for today’s meeting. Love you Girl!
((((hugs)))))
You all have been in my thoughts so much lately. I wish I could take you out for a drink and give ya a hug. <<<>>>
(((hug))) Wish I had some words to help.