Safe to Say

Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden, and unable to communicate. It is presently always fatal.
We'd read these words before the official diagnosis, but it was about a year ago that the words went beyond our eyes and settled into our lives. The words described the disease that was killing our daughter.
Those words were soon followed by others, kinder and gentler, from friends and family. Cards with words that filled us up when we felt empty, texts that offered sympathy and support, e-mails that reminded us how much we’re loved.
There are our own words too, the ones on the blog and the ones that are never committed to paper. Andy and I speak them to each other and they float through the air between us, private words that run through our minds and cross our lips as whispers. And we know each other well enough that, between us, the words unsaid are often the ones that roar the loudest.

She started talking early, and we envisioned her becoming precociously verbal. We imagined words tumbling from her mouth and competing for precedence in typical toddler fashion. We anticipated her spraying machine-gun rounds of " Daddy, watch me" and "Mommy, up" and "Pretty please."
She's able to say some things without words, there are still a few things we're able to hear in her silence.  Her words, unspoken, hang in the space around us.  And it seems safe to say that they are, perhaps, the most indelible, that they'll be here long after she's gone.
JEB