Friday, June 17, 2011

still no desserts tonight...maybe tomorrow

No desserts tonight...maybe tomorrow

Tonight I am sad

Finn has lost more words.  She is good at echoing, which apparently is not a good thing.  She is losing more and more words.  We lost Daddy again.  Tonight we lost Ick (her name for Nick) he is now just a grunt.  I am afraid.  I am afraid this autism monster and this epilepsy monster will rob us of her.

Sometimes I watch parts of her disappear.  She always manages to come back but what it...what happens when she can't?

Right now we are SMRTing her...labeling her disabled so she can qualify for grants and services that Cori and I cannot afford on our own.  Things she needs to help her reach her full potential.  Of course with this government shut-down looming on the horizon, those processes will also screech to a halt and the already slow process will stop.

So...

our window of opportunity that is already small and closing everyday will continue to grow smaller as the stupid government squabbles over who is better; democrats or republicans, while my darling daughter loses more words and drifts in and out of her own world and there is nothing I can do to change it.

it sucks

so

tonight I didn't make dessert

tomorrow maybe

tonight I wonder how we will pay our bills (my job is government and so is Cori's and my new job doesn't start until August) and how we will keep Finn in our world and how I will coax the words from inside her

tomorrow I will make cookies to help celebrate father's day
and
I will hope that Finn's ability to say Daddy comes back
so that on Father's day
Cori will be called Daddy once again

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