Every 90 minutes or so a baby girl is born with Rett syndrome. You go to the movie theater, get there a bit early, watch the pre-show, the previews, the movie… that’s two new Rett girls. Every two and a half days a new baby Rett boy is born. Just little drops in the bucket of new life; but to us, the people who love them, they are the glass full of joy, dreams, and hope. We watch them roll over, crawl, walk, babble, talk and then along comes Rett and dropperful by dropperful takes it away. Some days it feels like it just tipped the whole damn glass over all at once.
We try to stop it. We watch it slip away toward the edge of the table, our hands cupped, trying to catch as much water as we can- through therapy upon therapy. Sometimes we put some back in the glass, other times we just have to sit there and watch it slip through our fingers. Such is this life we’ve all been given.
There are times when the glass seems fuller, and we toast to a victory; other times it shakes so badly it seems it will shatter. We watch it… what does its reflection show today? A smile for the bus? A seizure? A giggle for grandpa? Or severe breath holding? Will there be a clock still ticking time? Or one with no time left? That’s our lives. Drops of this, drops of that; bubbles of laughter/bubbles in an IV bag; drops of kisses at night/kisses after drop seizures; splashes in pool therapy/splashes of tears on a hospital bed.
It reminds me of a stanza from the “Rime of the Ancient Mariner” by Samuel T. Coleridge:
Water, water, every where,
And all the boards did shrink;
Water, water, every where,
Nor any drop to drink.
So often we are adrift on that great ocean of the unknown, surrounded by all the things we need and, even still, Rett shrinks their hand use, their voice, their dreams whatever they may be. We can be completely engulfed and not one drop of anything will make it better.
To live in America, right now, means that some of our children have access to Daybue and many are seeing their glasses filled again, drop by drop; that does not mean we still don’t see reflections of what could have been in that glass nor that we don’t still watch for the clock to stop.
I’m never sure what will appear upon a page when I sit down to write during this month. Maybe it’s the hurricanes that made me think of Rett syndrome like water- swirling, flooding water causing so much destruction and yet even in the midst of devastation there are always pockets of joy, good will, a life saved, and there’s good water- good clean water brought in to help people survive, like Daybue and the constant research which will bring options around the world and one day a cure for some.
Please keep those in the path of destruction in your thoughts and, if you can, be a drop of good for someone in need.
(20min delay)