A New Year's Update from Miranda

This year we learned to count time in seasons, not years.  We wanted to pass time with more awareness of what was happening around us: the changes in the trees, the weather, and knowing when and how to grow food.  So much happens in a season anyway.

In the first months of 2014, as winter yielded to spring, we had so many hopes for the year.  In the middle of March we confirmed what we’d suspected for the past few years: Greg has Huntington’s disease.  Two days after receiving the diagnosis we ran a 5k (for those who aren’t aware, we’re not exactly regular runners).  Watching him dart through the crowd as we ran, I felt very alive: it seemed like Huntington’s disease wouldn’t touch us for a long time.  It’s easy to be hopeful in the spring and summer: the sky is blue, the trees fill with buds, and the air starts to warm.  The diagnosis seemed like a gift in some ways.  There is some resolution in having fears confirmed, rather than living in uncertainty.  Even more powerful was the gift hidden in the diagnosis: how often are we reminded, after all, that the people we live with and love are finite?  It seems that life often lulls me into complacency, under the illusion that we will all be here forever.  It’s easier to love better and more deeply when we remember this isn’t the case.  

This fall, after a summer that was as lovely as it was unsettling in unexpected heartache, it was harder to keep that optimism.  The hope I feel without trying when spring blooms appear takes a lot of work to maintain in the grey drizzle of fall.  We noticed some physical changes beginning with Greg’s body, and have tried to make light of them.  Our son has begun to talk about the things that he wants to do with his dad now, while he can.  Looking forward at seasons to come is even more difficult.  We are at the beginning of many goodbyes.

When I used to think about facing Huntington’s disease, I thought about it as something I’d do alone.  In the summer, soon after the diagnosis, a friend sent us to a podcast from On Being that reminded her of us.  I discovered this Story Corps video of “Danny and Annie” there, a treasure tucked into one of the sidebars:
(https://www.youtube.com/watch?feature=player_embedded&v=WNfvuJr9164

I think I’ve always imagined our story, if it had to include Huntington’s, would be kind of like Danny and Annie’s story: I would walk in with Greg, and walk out alone.  And in some ways, I will be alone.

But I don’t think of our future that way anymore.  If 2014 taught me anything, it was that we don’t have to be alone.  In 2014 we experienced big losses.  Some of them we saw coming, and some of them came out of nowhere and broke our hearts.  But we’ve met those losses in the middle of love from friends and family who love us so deeply and remind us who we are.

So in 2015, I hope we remember to live in each season as they pass.  I hope we remember that the people we love won’t be here forever, and act accordingly.  And for those who have asked for an update: yes, we will be going to Italy!