Good Grief

Charlie Brown, Halloween 2010
This week Tucker learned what sad means.
I heard the toilet seat being closed, repeatedly, and discovered he'd been putting wooden puzzle pieces into the bowl.  Fortunately he didn't flush.  I kneeled down and asked him to stop, explained that it would ruin his toys, that it was yucky, and that it made me sad.  In the scheme of things, soggy, germy puzzles is the least of my worries.  Tucker seems to pay closer attention to our moods these days though -- "Mommy sad."  "Daddy sad."  "Colby sad."  He overstates it, but sometimes he's right.
Tuck, on the other hand, is rarely sad.  And who would be, with cozy holiday jammies and pockets full of Halloween candy?

Edited to add:  We continue to share blog revenue, from sidebar ads, with BDSRA.  Because of your interest, the blog makes about a dollar a day.  However, we cannot, to our knowledge, control the ad content.  And frankly, we're frustrated by the recent political messages... Our apologies.


Pill Bug

It's what her daddy calls her when she's all curled up.



One of Those

Just to be clear, there are days that are gray.  There are days when the bolt is empty and every moment goes entirely unlined, days when the metaphorical silver doesn't make an appearance, doesn't even pause to say hello.  There are days that sever every stitch of comfort we may have managed to seam around ourselves, and days when sorrow's stake on our hearts is driven deeper.  There are days we do not keep calm and we do not want to carry anything, let alone on.  Days when we feel like we're being held up by one string, and we have to avoid people who carry scissors, whose words -no matter how well-intentioned- cut.  There are days stacked with intense sadness, days when emotions keep a busy schedule of up and down.  Days when we're terrified, desperate, poised to sell our souls, days when we surely leave palpable clouds of melancholy in our wake. 
We don't often write about the days that feel heavy, that have more darks than lights.  We don't usually blog about the days when we feel gray and crumpled, like used tissues, mouths sagging at the corners, faces made ugly by grief.  But we do have them.  Boy, do we have them.


On the Rocks

Outside he glistens, the bright striations in our grief's granite. 


Walk for Celia

What can I spare? What will it take?
I'm intrigued by the difference between these questions.  Most people are prone to share spare cash and spare time.  I’ve admittedly felt generous when I’ve done that.   But I realize, at least for me, better giving would start with some thought about what is necessary.

I am aware of one infantile Batten Disease research study, a very promising three-pronged therapy, that currently requires $750,000 for a six month toxicity review to gain FDA approval.   $750,000 is a lot, and that's only one project.  It's going to take a lot to beat Batten.  Maybe more than any of us have to give.  But most of us have something to spare.

Each year Batten Disease thrusts the extended members of another thirty-plus families into mourning.  I'll tell you what none of us can spare. Another child.

If you're able to share five dollars and a Sunday afternoon, please consider joining Celia and her friends from The Ohio State University's Medical Intensive Care Unit at Antrim Park on November 21st.  They organized a walk for Celia last year, and raised nearly $800, which was donated to BDSRA (and then doubled through a matching grant!).  They're hoping for an even bigger crowd this year.  The MICU is asking for a five dollar donation to BDSRA, which can be made the day of the walk, but there is no official registration to participate.  The event begins at one o'clock, near the large wooden dock, with four laps around the lake as the goal.  Pets are welcome, encouraged even.  Drinks and snacks will be provided afterward.

Note: Because we already had plans for Nov 21st, Andy and I will not be able to attend the walk this year.  If she's feeling well and it's not too cold, Celia will be there with aunts and grandparents.  And if he's behaving, Colby might be there, too.


Feeble Light

A bit of time in the evening, stolen before day and night switched places.  


of the Fall

Despite the cinnamon hue that hovers around her head, much of the time life drapes about her like the fading colors of a late fall landscape.  Her movement withered, her body curled like the leaves on the lawn, dehydrated and dormant.  She's quiet, her vocabulary blown away by neurological storms.  Occasionally though, laughter unfolds.  And I find myself wishing we could box up the peals, store them with emergency supplies, between bottles of water and boxes of batteries.  Wishing we weren't going to run out, and knowing laughter will always be part of her legend.


Where We

leaft off, last week:
Carving time (but not pumpkins) in the backyard - with these two - before we left town:
And then, for several days, it was just the two of us:
In New York, where we celebrated the wedding of one of our family's favorite people, visited with old friends and made new ones, slept in, ate well, spent time with cousins, saw Broadway shows... 
Where we made some really super memories.


Fall Break

The mums in our yard are mingling.  Accepting nature's invitation to some festal affair, the bright buds waltz in the wind.  Also, they get smashed underfoot, or underbutt.
And the leaves, relaxed into rainbows and raked into piles, are resting.
We're hoping to do some dancing and mingling, and some resting and relaxing, this weekend.
More after Monday...


Maybe Latering

There was plenty to do today.  There always is.  But of all the decisions I made and all the choices I chose, the best ones -by far- were the ones I might have saved for later.  The ones I might've thought we needed to plan for.  I am not a particularly spontaneous person.  I mean, I'll pause in the kitchen to embrace Andy, dishwater dripping from my hands.  And I'll abandon clean socks mid-match to read Hello, Brutus for the gobzillionth time.  But today I did some of the things I don't always give myself permission to do.  And looking back over the day, those were the best parts.  The parts that were unnecessary.  Unnecessary, but essential.  A few years ago I might've maybe latered.  I might have let cluttered countertops and dirty floors and errands and to-do lists get between me and Andy and our children and our friends, but not today.
No time for passion, no time for play?  I wish for there never to be such a constraint on my clock. 



Behind the Seams

We wear worry inside, and it wears us out.
She wears purple, and a smile upon her face.



Have a Nice *Gray*

Oh, we did.  We had a great day, full of scarlet and gray.  Four tickets arrived on our doorstep again this season, a result of last fall's chance meeting with a very kind man.  Sometimes you can just feel a person’s decency, in much the same sense that you can intuit a person’s complete lack of it, and although we don't know him well, this guy was nice when we needed nice.  More than once.  This time he hoped that we could enjoy the game as a family of four.  It was unseasonably hot today, and since Celia doesn't regulate her body temperature well, and because we thought she'd prefer an afternoon nap as opposed to the noisy stadium, she stayed with Grandma, and Grandpa used her ticket.  And the four of us had fun.  The friendly folks around us tolerated Tuck kicking their backs and stealing their Cracker Jacks.  He got to see Brutus up close and to practice his "I-O"s.  And we got to enjoy making early OSU memories with him.  It was one of the nicest days...


Don't Touch

He picked up dog poop in the backyard.
He wants to unload knives from the dishwasher.
He is fascinated by the buttons on stereo equipment.
As much as he hears You may look, but please don't touch, Tuck deserves some special tactile activities.  He asks to play with these dry beans several times a day.  
There are things we just won't let him touch, but there is no doubt this child is in touch with joy.



The tenderness of God is not twirling around in our living room.  So I look for it elsewhere.
My tendency is to search and search, to compile a large list of places I spot it.  But to be honest, sometimes I have trouble finding it.
I'm not sure why I feel like I need to suppress the signs of my disappointment, to constantly cover them with the glitter of gratefulness.  And even trying, I may only partly succeed.  It can be hard to love where your child is when it's not where you wish she could be.



Attired boy, dancing.
 A tired baby, sleeping.


A Friday Morning at the Deaf School Park

This morning we drove downtown to visit the topiary interpretation of George Seurat’s famous painting A Sunday Afternoon on the Isle of La Grande Jatte.
And to see the ducks and the koi and the squirrels, to climb on park benches and dance on stone picnic tables, to roll in wet grass and scramble through carefully manicured flowers.
We followed brick pathways and shuffled through crisp leaves, explored the pond bank and searched for bugs.
And with sun on our shoulders and dirt on our knees, we whispered quiet secrets to the morning wind. 
Well, one of us did it quietly...