Now and Forever

When asked recently to explain how we manage our emotions -- what it was like to celebrate a birthday when it was probably her last, what it meant to honor the Easter holiday and all that it promises, how it feels to watch him fall in love with his older sister -- we couldn't articulate a response.  It's difficult to explain how the holy and the humorous, the silly and the sad, mingle in our days.  Does every parent know what it feels like, at the tired ending of a too long day, to hope for another just like it? 

Celia, fall 2008

We're often - almost always - overcome with emotion, unable to parse them all out.  Hope and panic and confidence and despair all spurn from the same place, swerving like mountain switchbacks.  We catch ourselves being cautious with the best feelings, subconsciously afraid to experience too much joy, as though there's a meter inside that will only allow us so much happiness before a warning registers.  Even the small, daily details are associated with heartache and hard edges.  But we line up the merriest pieces -- her cheeks the pink of ballet slippers, the warmth of her breath, a pleasant reaction to a bite of rice pudding, everything about her a thousand shades of beautiful -- and arrange them, permanently, into our story.  As much as she is full of beauty, our lives must be too.  Now, and forever.
With her diagnosis, mortality was forced into our field of vision and time bent away from our favor.  We can't postpone our lives, our ability to be happy, to a future date.  Life should be lived now, good now.  And we try to make it so, with her help.
JEB