Tomorrow morning is the first IEP to set Kate's path into adult living. I'm being grabbed by so many emotions, but mostly I am wishing that Jeff were here to make these decisions with me. There have been so many life-changing decisions that I have made these last ten years with only the memory of what he would want: moving to Northern California to get Kate closer to specialists; having her brain surgery; moving her to a board and care home; having the vagus nerve stimulator implanted. Living another 20 or even 30 years isn't enough time to care for Kate. This should not be a burden placed upon Dana, although I know she doesn't see it that way. Making decisions for an adult who will be a child for her entire life is more wrenching than I ever dreamed it would be. And to not be able to provide for her the way I want to is most terrible of all. I feel helpless and frightened and very alone, just as I have before all of those decisions.
Dear Creator, take care of my girl who, although she cannot care for herself, has inspired so many of us to care for those with special needs, those innocent ones who through no fault of their own need so much more of us.
