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?

The cold never bothered them anyway

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.