by letting things go

Of all the medical approaches we experienced, hospice and palliative care were the only ones that felt right, even though that meant our daughter's death might come more quickly.  Hospice caregivers enhanced Celie's quality of life, our family's quality of life, not by adding things, but by letting things go.  We were glad the Pleasure Guild invited us to be part of their Fado fundraiser for NCH Hospice last week.

Andy slung some serious black and tans, and after I poured one Palm without spilling, I mostly loaded dirty glasses.

Tuck proposed a toast to Celia and kissed raffle tickets for good luck.

Not pictured are friends who came to Fado, who've been there all along, who, when they weren't able to lighten the emotional burden, lightened loads like laundry and meal preparation and childcare.  To them, and to the ones who couldn't be there, to the ones who offered to play with the boys while we poured drinks and who extended kindnesses with Celia in mind last week, we continue to be humbled and grateful.

her hair, his heart

I'm proud of myself, that I'm mostly able to put loss in a place where it doesn't poke at my heart all the time.  But then it pokes at his.

Riding in the front of a red shopping cart, Tucker said, rather randomly, Mom, I was thinking about Celia's hair.  It was beautiful, wasn't it?  Remember it was curly?  He held back tears but I could hear sadness seep from the cracks in his voice.  I nodded, flashed him a sympathetic smile and felt the sudden need to lean on something firm.

Several times over the past few days I've fingered the small brown barrette we found when we rearranged what had been her nursery to make room for Tolliver's big boy bed last week.  Each time I felt the warm beginnings of nostalgia driven tears, and I did not sense shame in them but I could not find any wisdom in them either.  

I wonder now, during the ongoing catastrophe, whether we kept our promises to Tuck, whether we took him to the zoo and the park and the pool when we said we would, whether we read enough books and took enough walks and built enough block towers.  I don't think he resented the way we loved her, the way that parents love each of their children, with shattering devotion.  I don't think he felt slighted by the way her illness turned our days into question marks.  Even at two, he seemed to understand the difficulty of our predicament, seemed not to begrudge her theft of our good time.  When someone says He seems happier now, I try not to feel like his perceived sadness was our fault.  Nor is the sorrow that visits him now.  I believe not feeling anything at all could be somehow worse than feeling sad sometimes.

When he was a toddler, one of Tucker's very first joys seemed to come from wobble-legging around the house looking for her, giving her kisses and sharing his toys and stroking her hair.  The joy of being a brother, the joy of being alive, has always been so concentrated in him, boiled down and intense.  What pokes at my heart right now is that somewhere in his he'll always carry the ache her absence leaves.

We'll be pouring drinks at Fado from 7:30 to 8:00pm at Easton, hoping to help the Pleasure Guild raise money for hospice and remembering our little girl.

Wrestling is their love language

I clean up breakfast dishes while the boys run laps, squat to collect bits of scrambled egg and wipe syrup off seats while peals of laughter echo in their wake.  One catches the other and they tumble to the floor, labrador levels of enthusiasm.  These boys were made for happiness.  We all are.  

Not pictured

Actually all three boys who live here are pretty excited about the season.

when gratitude wanes

This week it feels like the sun has shone without mercy, like the trees have been stingy with their shade.  Like the grass is too tall and her life was too short, like there are too many mosquitos and there will never be enough sleep.
Ours are, mostly, laments from a blessed and well-equipped life, and I am loath to admit we have any at all.  When I look past the late summer malaise I know we are lucky to be glum about so little.

For more information about this year's "walk" and to register for the event, visit Premier Sports' Battling Batten page.

trying

Tuck's been trying to build a jet pack kite.  Inside, as ideas come to him, he talks through them aloud or asks for help sketching designs, wondering whether this or that might work.  Outside he puts his theories to work, undeterred by utter flops.  His list of reasons for needing to fly is almost as big as his portfolio of ideas, and his perseverance is remarkable.

A few days ago he said, Mom, do you think we could save the chicken bones and since my jet pack kite doesn't work yet we could send them to Colby tied to a balloon?  His eyes were bright, sparkling with life, intelligent in the way that knows too much and not enough all at once.  And when my throat reopened, I managed to answer: We could try. 

We've updated the Current Fundraisers tab, above, to include several ways -virtual and IRL-

to be part of our ongoing effort to raise money to fund important research through BDSRA and/or support hospice services for sick children and their families through the Pleasure Guild.

by any stretch

I used to be able to hold him in my arms, against my chest, and create a circuit of calm, the comforting comforting both of us.  Now he creates his own"circuits"  --batteries and wire and remotes, phone chargers and the baby monitor and one stray Nerf dart-- that stretch around the room.

He tied his tool belt around his waist, deliberately filling each section with kitchen contraband and junk drawer miscellany -- a slotted spoon and a meat thermometer, a calculator, a paint brush and some paper clips, all the things he'd need to build his own computer.  Occasionally calm, Tuck's more often a bundle of joyous activity, busy in ways that help me see his heart shining right through his imagination.