If someone
could explain to me how to be a good mother to a child that is recently blind, suffering from dementia and borderling schizophrenic symptoms with a good dose of rage and topped of with the inability to self inhibit…
THAT WOULD BE BLOODY AWESOME.
Because I wake up feeling like shit and I go to bed feeling like shit.
And nothing I do for her ever seems to be right.
This is a nightmare and at the end of this I will be eaten alive by guilt because on some level I am sure I will feel some relief.
I HATE THIS DISEASE! Please let tomorrow be a better day. I want my little girl back.
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 have no words. I am just here – thinking of you.
I just want to squeeze you tight IRL, it will do nothing to help I know but it’s what I feel I want to do every time I think of you and your family and this horrendous diagnosis.
That picture had me with a lump in my throat.
You are an amazing mother, Kat. xx
Hey Kat- I just wanted to say Hi and let you know I have been thinking about you.
I have no advice, but I am thinking of you all. I just can’t imagine how hard it must be.
Oh Kat, lots of ((((((((((hugs))))))))))) to you. Thinking of you and your family xx
I wish there was something I could say that would help, but we both know there isn’t. Just know I’m here and I’m thinking of you of all. ((((hug))))
(((((hug)))))
I’m here if you want to call/cry/vent/bitch.
Kate, I wish I had an answer…you are my best friend and I love you with my heart. The guilt is horrendous and I want to make it all better. It is good to vent even if there are no answers.
I think you are amazing. I think your plan to let Rachel just have her childhood, rather than allowing her to worry about her diagnosis, is a huge and selfless act of love. You carried her inside you, and protected her from harm, and you carry the weight of her struggle now and protect her from it. THAT is a mother.
Her picture made me cry…beautiful, precious girl.
I can’t even begin to imagine what you’re going through. You are doing the best job you can. We’re all human, none of us are perfect… Rachel is a lucky little girl to have such a good mommy. (hug)
Thinking of you all.