Normal day
Rachel was really normal today. I know that was partially because I didn’t see her all day but before her first day of school she was pretty good getting ready and after school all the way until bedtime she was pretty manageable.
When your daughter with a rare and fatal disease has a normal day you wonder if the bloodwork somehow got screwed up at the lab. And then you realize how crazy that sounds and question your sanity. She has the symptoms. She is going blind. She has this disease.
In happier news we are going to Disneyland due to the absolute kindness of Make a Wish!
And… JULIEBEAN starts Kindergarten tomorrow!!
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.
So glad Rachel had a great day on her first day back at school.Every day is one more to enjoy.
Kindergarten is going to be wonderful for Julie & then London off to pre school…wow they are all so grown up. Hugs to you & John & each one of them.
Thrilled Make a wish has responded so quickly for you. Have fun. Mum XX
Holy cow! I can’t believe Julie is going off to K already. Wow. Before I know it, I’ll be sending Chase. *sob*