every beautiful thing

Tuck's current favorite game is rhyming.
Yesterday after his pediatrician asked him what he liked about school and what his favorite animals were, after he told her about goliath frogs the size of rabbits and micro frogs that fit on your fingertip and sticky toed tree frogs, he explained how to play the rhyming game.  Okay, I'll say a word and you tell me something that rhymes.  That means it sounds the same at the end.  Okay, what rhymes with eargloves (he meant ear muffs, but she understood and went with it).  Grrreat, he replied, and they continued back and forth, rhyming words like mom and mirror and watch and window.  It was fun to watch them play.  It's been fun to rhyme with him. 
But we played another game recently that may forever be my favorite.  We were outside when Tuck said Mama, let’s play a game. Let’s count every beautiful thing that we see. "Alright Buddy, that sounds fun!" I exclaimed as I looked at him in response, hardly able to get past the first.

He claps, but I may be his biggest cheerleader.

Tollie walked around outside this afternoon with one of last summer's citronella candles and the grill lighter.  He asks every day, with a grunt and an arm fling toward the stove, to light the scented candle we keep in the kitchen.  We light it, he blows it out, and then he claps.  Repeat, repeat, repeat.

The lighter was turned off, if that makes this game seem a little safer.  And also, he was wearing a helmet.

One of the last years I taught, I happened to mention to a few of my fifth graders that I'd always wished I'd been talented enough to be on Broadway, that the thought of people clapping just because I walked on stage was rather thrilling.  It was only a couple days later when I walked into my classroom to receive a standing ovation.  Random, and for no good reason, those ten year olds kept it up all year - they'd hear my heels in the hall and surprise me with rounds of applause I doubt I deserved but that definitely made the school day more fun for all of us.

 Why don't we have any photos of him clapping?  He claps all day long.

After he feeds himself a particularly delicious bite of dinner and after he asks for and receives a clean diaper, he claps.  After every shot, air balls and toilet bowls and swishes, he claps.  After each round of Wheels on the Bus and after he delivers trash to waste basket, when he dismounts from the couch or leaps over the laundry pile, Tollie claps for himself.  I encourage it, actually, because not everyone owns their strengths as passionately as they own their screwups.  I want him to.  Being alive is such a strange, uncertain journey, we all need as much applause as we can get.  I put my hands together right along with his today.

This Little Miggy

 her toes, 2008

In February I found myself wondering what we could do for Rare Disease Day, how we could reach a broader audience with information about Batten Disease.  I've been reading This Little Miggy Stayed Home for a few years, and have enjoyed the special needs spotlight series Miggy shares each week.  I wrote to ask whether she'd consider a posthumous spotlight.  We're there today, sharing Celia's story.  If you read here, you already know it, but perhaps you'd like to visit Miggy anyway.  She documents some of her own creativity - sewing and painting and decorating - but she mostly features her daughters in her writing about day to day stuff.  We're so grateful to Miggy for sharing her space and allowing us to stretch the circle of people who know about Celia, and about Batten, a little wider.
link

Spring-ish

We're looking forward to more todays, with the sun in the sky for a few more seconds we can leach out a little length before we sleep and start again.

getting up

Easter is one of those times I find my heart in my throat, a thick lump.  Occasionally I feel it leaking out through my eyes, tears of love and of grief and of great, great happiness.  Actually, it's not just Easter.  I pretty much have to pass my hand in front of my face like windshield wipers on a regular basis.

On Saturday it was warm and sunny and the boys hunted for Easter eggs with their cousins, followed by lunch outside -- I pushed pear slices and applesauce and string cheese and peanut butter, because they'd essentially eaten donut holes and jellybeans for breakfast.  After lunch they rode bikes from one end of the block to the other.  Tuck - on his new, bigger bicycle - fell over once and looked up, stunned.  Andy quickly made a big deal about it, "You had your first bike wreck!  And look, your helmet protected your head and you're fine!  You're not hurt!  Hop up and climb back on!"  The next time Tuck toppled, the sidewalk touched his shoulder for a split second before he jumped up and hollered, "I had my second bike wreck! AND I GOT RIGHT BACK UP!" 

I can recall several conversations with Tucker over the past year that have gone something like:
When Celia comes home from heaven's house, she can go to the beach with us.
Well buddy, once you go to heaven's house you can't ever come home again.  Once you're dead you're dead.

We baked bread today, and Andy talked about the way dough rises.  There's no such thing as letting it rise too long he explained.  Although it could turn into sourdough, a little extra rising time might deliver a more desirable, complex flavor.  He lifted the heavy ceramic pot into the oven and went on, "And even if the dough rises for so long that it begins to fall a little, it can't really unrise.  It'll pop back up as it bakes."
Of course bread left too long could lose its structure and its ability to hold air and just collapse into a glob, and there's probably a metaphor for life and death somewhere in that sticky mess too.

We watched a short Easter video online over the weekend, an illustration from the Jesus Storybook Bible.  In it Jesus is clearly dead, and then not dead.
Tucker, who was sitting on my lap, turned back to look at me, confused.   Once you're dead you're dead, I heard myself saying to him yesterday, last week, three months ago. 

When you're dead you can't become undead.  What rises cannot be unrisen.  You fall down and you get back up.  His making sense of the world comes from us.  From us and from the media, from his friends and his teachers and from books and from being outside in it.  Some sort of delineation of who rises from the dead might be helpful, and although I think I understand most of it on an intellectual level, I find myself without a confident explanation for him.  I'm fairly certain that grace will fill the cracks where I fall short.

In the sorting it out process he is constantly taking us on explorations that make us think hard, and much of our own making sense comes straight from him.  Know which button you push to get to heaven? he asks, his imaginary rocket in hand.  Hope radiates from his face as he answers his own rhetorical question, The green one!  If only he could levitate on hope alone.

As Is (as opposed to As If)

Being home brings with it the responsibility of relentless being-aware.  It's my job to notice miniature successes and minor failures and every small thing in between. 
I try to see it all in softer focus, beyond the anxious foreground, around distractions that gallop like wild stallions.  I want to do it well.  I want to do it perfectly.  I want to watch them play and play with them and pick up all the small pieces. 
This sense of urgency, this earnest effort not to mess things up, this insecurity, they all seem to attach themselves to me like parasitic fish. 

It doesn't matter whether Tolliver's wearing Tucker's pajama top, or that Tucker may not be wearing anything at all.  I'm getting better at dialing down anxiety on things that don't really matter.  
But so much does matter.  Like every small thing in between.

We all have at least ten things to do at once, at home or at the office or all of the above.  We all compare our behind the scenes with everybody else's highlight reel.  We all live under the scrutiny of an imaginary audience.   
As if anyone else's approval actually matters.  It doesn't.  
There is space between do everything and do nothing, between do it perfectly and you suck.  It's a healthy place, the middle path, full of trade-offs and forgiveness and enough.  I forget that, I try too hard.  I'm exhausted and worthless, I drop balls and break plates and make compromises.  It's hard to disassemble rotten habits.  It's hard to be a good parent.  But I want the boys to be good people.

In the middle of the relentless being-aware, I fight a strong urge to be physically productive, to complete quantifiable tasks, to look for immediate results.  Some days I respond well from the start, and some days it takes me a few tries to get it right.   
As if getting it right is any guarantee.  

Qué "Tol"