with feathers

Letters worth seven points in a game of Scrabble.  An assemblage of sounds that mean heaven.
When I was pregnant, nine years ago, I repeated her name over and over until it wore a smooth groove of hope in my brain, until I could hold that living, breathing bundle in my arms.
I still nurture a small seed of hope when I think of her.
The emotion, though, is a bit of a trickster.  It feels almost productive (I am busy hoping), but carries a burden of expectation, of wanting things to be different, things that are out of my control.

I have seen and felt my daughter since her death, four years ago: in a sole firefly floating through our bedroom on a dark summer night; in a beautiful morning glory clinging to a tree spotted only when I suddenly felt compelled to turn around mid-step on an island trail; in a bottle of cherry flavored bourbon after her brothers are in bed.
Her absence underlines how fortunate we are to have healthy boys.  Our sons will grow up to develop their own beliefs about spirituality and religion, about life and death, about hope and despair, and I trust they'll do plenty of exploring and inquiring in the process.  It’s okay if they don’t end up on the same page as us, it's okay if they decide it's all bullshit, as long as they find their own truths.
In the meantime, we can teach them about the good in people and about being kind to others.  We can talk to them about the wonder of life and about the beauty waiting to be found in the world.  We can help them remember their sister.

Sharing her story gives us back a small bit of control -- which private parts should we reveal, what will become her history?
We released balloons the first year, five of them for her fifth birthday, just a few weeks after she died.  It didn’t feel quite right, the letting go.  We just wanted to hold on.
The next year we collected six heart-shaped rocks to share, a way to weight her here.
On what would have been her seventh birthday we planted pinwheels, blowing a solitary wish into the universe, find a cure.
Last year we delivered donuts, sprinkling awareness and spreading kindness.

Nine years this March and we've already been working on how to honor her, starting early to make certain we do it well.
Feathers this time.  Because hope is the thing...

A crucial aid in getting through any kind of loss is the support of a strong community.
We learned recently that the Battling Batten event in November raised more than $9000, online and in person, and the total was held until a matching donation for most of it was available through BDSRA in December, making the contribution toward research more than $17,000.   
We are hopeful, and grateful.