It doesn’t feel much like a happy birthday. The crap I was pondering last night in regards to Rachel, the disease, school, etc is really, really depressing. I guess moving past the constant crying stage moves you into the anger and depression stage.
This is a nightmare.
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.
I’m so sorry, Kate. I think it would feel near impossible to have a good birthday this year. I hope there are moments today that are a little brighter, at least. Much love from the Canuck *hugs*
Wish there was something I could do or say to brighten your day. Just know I am thinking about you and sending you hugs.
It is pouring rain outside. Tonight will be good for a movie and a cup of tea. I might even get stuff for nachos. If nothing else it is company and distraction.
((((hugs))))
I so wish there was something I could say. I am thinking about you.
For what it’s worth, despite everything else, Happy (belated) Birthday!
There’s no question that things feel truly horrible right now, and that makes complete sense, but it doesn’t also mean that *you* aren’t worthy of celebrating. You’re a great, ultimately-positive-even-in-the-face-of-an-easily-overwhelming-hell-on-earth, strong, and much-loved woman who has done, and will continue to do, wonderful things for herself, her family, and her friends. Full stop.
Just wanted to delurk and say that I’m thinking of you. I found my way here through facebook I think- I’m just one of the far to many in the “Batten Circle” I wish I had the right words to say but after a 1 1/2 years down a journey that no parent should ever have to face, I’m not sure that there are any. If you ever need a sympathetic ear, please feel free to drop me a line. Sometimes just venting to someone who “knows” does help.
Good to share ice cream cake on your birthday & help Rachel walk the dog. Hope you can plan on Edaville or Santa land soon ,you have the money ready. Must make each day as good as we can. Enjoy your music card.We are here behind you for every day or night.We love you Mum xx