Halloween Eve
I feel like a jerk today even though I’m having a good day and the kiddos are as well.
What if this is the last year that Rachel can see?
I said I was going to dress up for Halloween but over the last two weeks I’ve decided against buying a costume. The kids were really excited that Mommy was going to dress-up. John even has a costume idea (tough biker guy with fake tattoo sleeves). I need to get out tonight and buy a costume. Maybe I will drag my brother with me.
Seriously, people. You only live once. Try and make it count at every turn in the road, at every bump and on every rainy day.
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.
Thanks for the reminder, I needed it. (((hug)))
This is my first year dressing up in….well… in far too long. And you’re right: you only live once. Enjoy! And post pics of your crazy costume!
im always reading
Had a great time with you John Clive & the children.Watched over 100 children dressed up come &choose candy. Great fun.Now I am home wondering what the next weeks & months will bring for Rachel & her family.But always know your Mum & Dad are here for you all.As ever in our prayers.We love you all. hugs mum XX