"Far from fragile... how about medically "un"-fragile, better yet how about just plain super heroism?" ~Ali Harper (that's me)
I cannot for the life of me find where I originally wrote those words, but my heart still feels the same.
Hydranencephalic children are considered "Medically Fragile" - a term I've grown to despise. Sure, they require an enormous amount of medical attention. They are regularly poked and prodded, manipulated and stretched in therapies, sliced and diced in surgeries, and possibly manage through less than friendly side effects from medications they're prescribed - all in order to live the "best quality of life possible"
That there seems ironic.
Those who are otherwise healthy, all of you reading this, would be miserable under the circumstances these children live under. The pain, the discomfort, the generally annoying disruptions to their days...