Ever since SOJIA nothing has really gone the way I have planned it. Parents don't plan to have a child suddenly become severely ill and so it kind of catches you off guard. It's like being hit in the chest. Knocks the wind out of you and even after you recover from it you still feel like you can't quite catch your breath. Some days it's harder to breath then others.
We took Emily to a counselor today because there has been an emotional side to this illness. She has an adjustment disorder that is being manifest through anxiety. The doctor was very nice and helped us put this into words to better communicate it with her school, but it still gets me down. I think because I remember that this is for the long run. Once again I am reminded there is no magic pill, the medicine never ends, there is no cure.
Sometimes I feel like screaming to the world; this isn't fair. We did everything right; this shouldn't be happening to our baby so make it stop.
That's putting the breathless feeling into words.
Bless you all, especially your daughter. This must be so hard, as well as unnerving.
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