People are wonderful
We have a customer that knows another family that has a son (within 30 minutes of us) that has Juvenile Batten Disease. The customer put us in touch some weeks ago and it was kind of nice to be able to talk to another person who understands (etc etc etc). Anyways, the customer put a note on our door last night and put a jar of her homemade tangerine / cranberry sauce underneath our tree on the porch. Very, very thoughtful.
Today John handed me a card from the photographer that took our wedding pictures and inside the card was a Gift Certificate for a free family portrait! So amazing! John and I think we’d like to do another family picture when there is snow on the ground. Totally amazing!
On Saturday the Mayor of Hull (Geri) is holding the annual Hull Holiday Showcase and, with the help of her kiddos, is putting together a “Batten Disease Ornament table” that will have Batten Disease info and offer kiddos the chance to make ornaments (including one for Rachel) and contribute to a paper chain for Rachel. The proceeds are all going directly to the BDSRA.
People are truly awesome. Seriously. I just sent our “Good Geek” Christmas cards to the printer. If you want one, please email me your address. The picture on the card is from our Disney trip and might look nice on your fridge. 
My email is mrskatvon@gmail.com
xoxoxoxoxoxo
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.
People can surprise you with their care…it’s amazing what humans are capable of. I hope you have a great Thanksgiving and will see you Friday night? BTW, I want an X-mas card!!! xoxoxoxo
I wanna picture!
People do sometimes surprise people with those who do care and will go out of their way to do nice things. That is all very caring!
Lulu: I have no intention of mailing you a card, you gotta come pick it up.
We are on for Friday night!
Jacquie: Do I remember your address? Ha Ha Ha Ha Miss you, girl!
Jess: I guess that I need to be appreciative for kind people and go out of my way to do more kind, random acts for other people.
The assholes get all the press. How many people have taken in kids from troubled family members and given those kids a better life. People can be really good. Just the assholes get the credit.