On a good day Rett Syndrome robs my sweet daughter of her ability to walk, to talk, to use her hands, to play, to sing, to color, to dance, to run, to swim, to hug or kiss her family, to grab a drink or a snack, to have any sort of independence at all.
And THAT is a GOOD day.
On a bad day (or, as the case is now, a bad 2 weeks) Rett Syndrome steals all of the above but goes a step further and brings on severe anxiety, unexplained pain, exhaustion, weakness that leaves my daughter unable to hold her head up at times, tremmors, long breath holding spells, poor appetite and screaming fits that last for hours on end.
Its pretty amazing what you can get used to. I am so past the physical limitations that Annie has, they get me down once in awhile but not often, I know what a smart, wonderful, happy little girl she is and that's really all that matters. But when the bad days hit it's hard to stay positive. A couple days I can deal with, I love her through and she bounces back, we are even more blessed to see that happy smile after coming through some difficulty, but when the bad days start to out number the good and I can't fix anything, I feel quite sorry for myself and my sweet daughter that has to live this day in and day out. I try hard to hold it all together but there is no break, no time out, no time off, it's constant, it's heart wrenching, it's suffering in it's worst form - in a child. God, bless my Annie and bring some relief quick!