Lightning Strike
Not sure why I titled this entry “lightning strike” because there isn’t a lot to elaborate on. Rachel has been figuratively struck by lightning and the whole situation sucks on so many different levels. We’re just trying to cope with the “today” and the issues with her vision, cognition, behavior and outbursts. Thinking about the “tomorrow” makes it a lot worse. Seeing my other 3 children mimic some of the behaviors that she models totally sucks but most of the people that witness it realize that they are copying Rachel and the people we know have been pretty understanding.
I’m at the shop today. They boys are at daycare until 5, Julie is at school until 445 and Rachel is out to lunch with John. I’m not a big fan of manning the shop but I’m so glad that John stole a couple of hours to go with Rachel to Lowes and Lunch. Those are the most important moments.
Spending more time working which has been good for me, personally. My Mom has been helping a lot with Rachel because I have very few options as far as her care. I can’t find “just anyone” to watch her the way I can a “regular kid” so its pretty much either my Mom or John. That part has been challening, especially as Rachel gets out of school at 11:15am on the 4 days she goes every week. Maybe she will be able to extend her day a little bit but I’m not holding my breath that she could sustain a longer day. Today at 2pm is her PT evaluation, I’ll be interested to see what they say.
Going out tomorrow night for a couple of drinks. Looking forward to it!
Taking Julie out for a quick nibble at the bakery in town on Saturday morning. Totally looking forward to that!
Must plan something special for Boston next because its his turn. 
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.
Rachel & Julie Boston & London are really excited for their cruise.
I am looking forward to it as well.One day at a time. Hugs Mum XX
Love you my friend!
Thinking of you dear. I am sure the time spent with her daddy is just what she and he needs. ((HUGS))