Thursday, April 1, 2010


....(sigh).....sleep deprived.....light sensitive.....this has been a test of strength for us both. When a bright eyed nurse came in at five we both wanted to say something. It was on the tip of our tongue. Mik kept falling back to sleep.....I was responsible to keep her awake. A dad made coffee in preparation for a sleep deprived EEG. Bleary eyed we shared our stories amidst preparing food. Our stories are similar...the girls' seizures are similar too. The night before he had heard Mik's and ran back to their room thinking it was his daughter's cries that beckoned him. I had done the same with his daughter earlier.

We are outta here now though. Having just been disconnected....We also opened the blinds to daylight and turned off the lights. It feels odd though....the last few months I have been consumed with her seizures. Always listening....waiting....asking how she is....and although nothing has changed, perhaps the intensity of the scrutiny has changed for me today. She has walked around the hospital - without her "leash"....without her cell phone.....without the umbilical cord. It is liberating to her - and yet I remind myself nothing has changed since we came in....though we are both glad for this - and for how these past few days have changed us yet again......and the results are still not clear.

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