Ashes and Bones is a work to honor a truly remarkable couple - Sarah and Mark. Sarah and I met at the Ozette Archaeological site where we worked side-by-side by day and at night, drank Wild Turkey and danced to Johnny Guitar Watson with men from Neah Bay.
After leaving that gorgeous stretch of beach, we apparently grew up. I got rid of the glasses, but kept the necklace and the man who carved it from an antler he found on the beach. Sarah met and married Mark, and together they began a family of beautiful little girls.
Anna, the eldest, proved to have a gentle spirit trapped inside a body that ultimatley betrayed her. Because of a defective gene this blonde haired, blue eyed cutie was born with Sanfilippo Syndrome, a genetic error of metabolism. Through time there was a decline in her ability to learn, followed by delayed physical development and ultimately deteriorating mental status. The syndrome is inherited as an autosomal recessive trait -- both parents must possess the gene in order to pass the syndrome to a child.
Who knew? What luck? Although I'm sure these thoughts ran through Sarah and Mark's minds a hundred, a thousand, a billion times, I absolutely know they thought, "What fortunate people we are to have Anna in our lives."
And how lucky she was to have them in hers. Even as her symptoms became increasingly evident and life grew more complicated, Sarah and Mark changed their family's routine as little as possible. They didn't say, "We can't do _____ because it will be hard to do with Anna." They said, "How best can we do ____ with Anna?"
The last time I saw Anna was at Dabob Bay on Hood Canal. Mark, a seaman to the core, had taken her shrimping. When they were done, he brought her ashore, slung over his shoulder like the proverbial sack of potatoes as he walked across the sand. He was grinning, pleased with his catch, not burdened one whit by the weight of his child.
(for more information about Sanfilippo Syndrome please visit
www.nlm.nih.gov/medlineplus/ency/article/001210.htm).
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