currency and cures

I want a reason to buy the dress on the cover of the mini Boden catalog.  I want a cure.  I don’t know any other children with Batten Disease the way I knew Celia.  I do know they’ll all die without well-funded research.

Hope is expensive.

The purpose of Rare Disease Day, the whole idea behind raising awareness, is simple:
Pharmaceutical companies will never recover the costs of developing treatments for rare diseases.  Even diseases that could potentially “share” treatments (cancer, diabetes, Alzheimer's) don’t add up to enough customers.  But there are scientists who have dedicated decades of work, intelligent men and women bravely battling elusive enemies, championing techniques that change lives.  Supporting their research initiatives and accelerating potential treatments can't be done for free.

Hope is expensive.  But the alternative is unaffordable.
Please let rare diseases gain widespread currency.  Please let rare diseases be cured.

Can a melancholy cry, a distant one day plea, pierce through the social media fog?  We're used to headlines about marauders and earthquakes, statuses about snowstorms and wars.  And we're well-aware that our worry seems small.  But Batten is bigger than the shadow it casts.  And a cure is worth whatever it costs.

There are worthy causes everywhere you look.  Thank you for keeping Celia in sight.


Time enough

Tollie was acting ornery tonight, roaring like the spiky dinosaur that was on the front of the pajamas he picked and rolling around on the floor making it difficult for me to get his feet in the right holes.  I narrowed my eyes at him and asked him to calm down.  He pointed and said: You have eyebrows!  I not have any eyebrows.  My eyebrows come when I get big?  My eyebrows grow and cover my eyes and I can't see?  

Fully-pajamed and ready for books he pressed his whole self into me, like a pet who pushes its head under your hands hoping to be touched.  I rested my palm on top of his head, his hair filling the space between my fingers, and looked into his root beer eyes, reassuring him that his brows will not ever block his vision.  I pulled him onto my lap, knowing my legs would fall asleep under his weight.  Uncle Adam says he's made of dark matter or spent uranium or something equally as dense.  He is a big boy, yet Tollie talks often about growing bigger.  I drink my milk, I grow big?  When I grow big I can sit in the driver's seat?

Tolliver outgrew a slight stuttering phase recently.  Except in it, we didn’t know it was a phase.
He'd been speaking smoothly, but then began drawing out the end of words.  I want-t-t-t my milk-k-k-k in my bed-d-d, please.  It seemed like maybe the peculiarity was a result of his thoughts percolating, words dripping too slowly from his brain to his lips.  He repeated sounds like he was hanging on to the platform for speaking, like if he didn’t keep making noise someone else would chime in before he could finish.

I waited a few weeks before I let concern over his end-of-word-stuttering drive me to asking for expert opinions. The resounding advice was to give him more time, to wait while he spoke and to be patient with the whole pattern because he’d likely outgrow it.
In the classroom, I was pretty good at providing wait time.  After I asked a question I'd look around, praise students for scanning books for evidence to support a good answer, reinforce slow, careful thinking, watch more hands shoot up.  I know that wait time can be learning time, growing time.
When I practiced quieting my first impulse to finish Tollie's sentence or to respond before he was done, it was easy to see that nothing needed to be said.  As I gave him more grace and less bulldozer, he gradually gave up the habit and good things brewed in the quiet.

Good things brew in the quiet.  Good boys grow when we're lucky.


Like father?



he won't be four forever

A few weeks ago Tuck was reclining in the bath water, warming up after being outside in the snow.  He sat up suddenly, extending fingers on both hands.  It became clear he'd been giving an idea some good thought when he said, "There are seven places where I like to be the best." And he ticked off the list, "the cabin, the beach house, our house, Poppy’s, RoRo’s, Grandpa Tim’s and Aunt Kate’s."
Some more of his favorites at four:

color: every one of them

breakfast food: Cheerios with cinnamon

fruit: mango

stuffed animal: turtle from Aunt Vicky

power up: punching

toy: LEGOs

thing to do outside: swim at the pool

book: James and the Giant Peach

animal: sting ray

brother: Tollie, except when he's mad, or stinky, or bothering my LEGOs


the dishes can wait

As told by Tollie:

We make car wash.
I wash all my cars.
My tax seat look shiny and bright.
My tax seat drive down the ramp!
My car wash awesome!


figuring out who he is

Tolliver is occasionally naughty.  He is naughty, and I am mostly struck by the reality of aliveness in him.
He is trying out words like stupid and hate and shut up.  I hate the dark.  I tell the thunder to shut up.  That show is stupid.
He is testing limits, doing things like spitting and hitting one more time after we've asked him to stop.
He is crying when he doesn't get his way, pulling back and letting go with a wail like a rubber band, stretching out the fake and letting it fling through the air.
He is figuring out who he is.
And he is occasionally naughty.  But naughty in the way that makes me, most of the time, feel fond rather than fussy.


Celebrate Love

I hope both our boys will always celebrate when love happens,
rather than make judgments about how it’s supposed to happen.


Ice melts, beats fade

Inside Ash Cave.  
It's hard to sit here without thinking that I am small and life is fleeting, 
without humbly approaching the idea that I am here now, grateful for that.

When we got home from Hocking Hills, I helped put the boys to bed and ran to the library.  They had far more questions than I had answers and we needed books about icicles and drum groups, stat.
I saw a friend there, one whom I hadn't seen for some time, who used to bring her now nearly seven year old to the same baby games I took Celia to every Thursday morning.  She said, with a smile, You know who I think of every time I come here, don't you?  And I did know.  Because I do, too.  For a moment, echoes of remembrance bounced back and forth between our hearts, her words opening a tiny crack in time through which relief could flow.  I thanked her for resurrecting Celia for a minute with the memory.  I think some people are afraid to mention her, worried they'll inadvertently remind us of her, as if she were something that could ever slip our minds.  Her absence will ripple across years and change our entire lives.  But she will always be the air we breath, the music we hum, and the beauty that helps blind us to anything bitter.


happiest days

The acoustics of this season are crisp, the snow crunching underfoot, the wind whistling all around.  
We just spent two see your breath cold days adventuring in Hocking Hills.  When we got to Ash Cave, we immediately heard the reverberation of steady beats.  Following the trail, stopping to investigate icicles and fallen logs, frozen creeks and the way the sun made everything sparkle, we eventually found a Native American drum group.  The boys were fascinated.
The boys, the happiest explorers, the most observant onlookers, splendidly curious little adventurers, are perfect echoes of their father's soul.
We encountered natural wonders like we'd never seen before, and faced the kind of parental decisions that we run into every day.  You know the kind that resonate with the complete responsibility that parenthood brings:  Do we let them climb?  Could the ice above fall, could the ice beneath break?  Are we holding them back?  
Tucker discovered that icicles can make music.  He'd break one off and drag it along the row that remained, notes ranging in pitch the way the icicles ranged in size.  
He saved part of one of his favorite icicles, but it didn't last long.  The best things rarely do.

Speaking of music, have you visited Cardthartic's site recently?  Follow this link to one of their most popular new cards, and browse a bit if you have time.  Their cards are my favorite.  The kind I feel proud to send and happy to receive.


Funny Valentine

Tucker is working on valentine cards for his preschool classmates, collecting jokes to pass out to friends.

How do snakes celebrate Valentine's day?
with hugs and hisses!

What do you call a small Valentine?
a Valen-TINY!

Do you have any good ones to share with him?!


it's not easy being meem

They both request books, and although I can squeeze them onto my lap, I cannot read two stories at once.  
They both want to hold the remote for the radio controlled car.  They both want to push the elevator button.  They both want whatever toy Tucker is playing with.
I work to negotiate seemingly fair settlements, but as his will is thwarted, Tollie's tone grows increasingly agitated. It’s like he arrived in the world outraged to discover that his brother got here before him.


with them and for them

There must be a million ways to be a good dad.

His default is kindness.  He is patient and forgiving, wise and resourceful.  But his first reaction is to listen, and his factory setting is to react kindly.

He remembers, more often than I do, to stand back and watch the boys.  But he is constantly doing things with them, too. With them and for them and because of them and in spite of them.
I know he wants to give them the world, but he knows he's giving them more by denying them a lot.
Sometimes, when they're playing together and he's asked to pick a superpower, he chooses to be invisible. But that doesn’t work for me. Sometimes he is all I can see.
And sometimes, because I'm watching him, I remember to watch the boys, too.
I watch them spiraling into themselves and have faith that they will grow into men who use kind words and their imaginations because their father does.


out of the gray

I feel like I could draft a tourist brochure for Arizona.  The state smells like vitality and adventure.  Everything smiles pleasantly, the vistas and the red rocks, the javelinas and the breeze.  Sedona is supernatural in its beauty, and has a way of making moods soar similarly.

I'm getting in the habit of going someplace sunny in January, and the southwest did not disappoint.  I was astounded by the desert colors, more saturated than I anticipated.  Every shade, sage and emerald and pine and moss, tangerine and salmon and crimson and rose, made the air smell green and the wind feel warm.
I feel like I could compose a rather compelling argument for leaving Ohio mid-winter, for traveling with a dear friend.  Nothing proves quite as therapeutic as poring over life’s minutiae all day long, starting with a strong, hot cup of coffee as the sun emerges and ending with a large glass of wine as light turns to dark.

Without the organizing principle of preparing meals for the kids, of cleaning up crumbs and laundering clothes, there was time to look around, to eat when our bodies were hungry instead of when our brains said it was time.  To sleep the same.  Four days of feeding a friendship, and our souls, of sitting in the sun and of climbing rocks into the sky, is powerful inoculation against grief and the gray to come.
Coffee with cream and sugar and sunshine.
Chasing the sunset.
A desert rainbow.
#cathedral rock / Where heaven might touch earth.

Home again, everything smells rather cold.  And a little bit like boys.  The snow is grimy, frozen traces lingering stained in gutters and lace-edged along lawns.  But inside there's a regular hint of growth, trails through all sorts of imaginings and the sturdy comfort of routine.  And I feel like maybe I ought to just write about that instead.