I had the occasion to speak with a friend yesterday with whom I haven’t spoken in over a year. We did the obligatory “how’s it going?” conversation, and of course, that led to the hardest question of all: “How’s Rhiannon?”
For readers who do not know the story of my stepdaughter, she was born in 1985 with polycystic kidney disease, which is, according to Wikipedia, “the most common genetic, life threatening disease affecting an estimated 12.5 million people worldwide.” Her enlarged kidneys at birth led to a number of secondary issues, including underdeveloped lungs and intestines; at the time of her birth her doctors had no plan of care for her but she beat the odds and managed to survive (after 10 weeks in hospital, much of which was spent in intensive care). For the first three years of her life she progressed, slowly, under the oppressive label of “developmentally delayed,” but as she passed her third birthday she was speaking and even on the verge of walking.
Then she had her stroke. (more…)