Can’t sleep
Can’t get over this and what is in Rachel’s future.
Can’t get over how unfair this is for her.
Can’t get over how hard it must be for her.
Can barely breathe.
I just can’t believe this is happening.
About Me
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 am so so sorry hon! I wish I could wave a wand and make it all better for all of you. You are always in my thoughts. xoxoxoxox
Just wanted to respond that I’m here and I have no idea what to say but had to respond.
Are you having/considering counselling for yourself? I don’t think anyone could accept or come to terms with a diagnosis like this but maybe it could help somewhere, on some level?
(((hugs)))
You are very right! It’s really not fair.
I have nothing to offer but ((((HUGS))))
She’s not my child and I cannot get over the unfairness of it so I cannot begin to imagine how you feel. ((hug))
I am with you John & Rachel & the little ones all the way.
I will help you with Rachel any time you ask. I cant take away the pain but I will give you all the love & support that I can. I love you. Mum XX
Thank you for listening. It means a lot to me.