What is it?

When people ask about her disease, there are so many things I want to say.  It’s shit.  It’s interminable medications and sleepless nights.  It’s watching your child die, the possibility of death every day.  It's a parent heart that pounds like a dryer full of wet tennis shoes.  It’s a long list of nevers.  It's terror and desperation and anger, days spent weeping from an internal faucet.  It's not like other families, who hope to keep their kids out of kitchen cabinets, out of trouble, out of whatever, it's just wishing you could keep yours out of the ground.  It's ridiculous amounts of suck.
It is also kind people and sweet words, bags full of food and mouths full of condolences.  It's knowing we are loved, and seeing it in action.  It's rich, unexpected delights, gifts of strength, perspective and hope along the way.  It's the ability to blow off the dust and clear the clutter, to know this life is a lovely one, it's a constant reminder to resist complaints about the tediousness of minor annoyances.  It's an ever-growing chorus of prayers.  It's the slow, steady promise of science.
We spent the day with other families who are affected by Batten Disease, an afternoon in the presence of so many who know precisely what it is.  

Today it was simply a good excuse to dress up and smile.
JEB