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5.25.2015

Memorial Day

It used to be that we were still asleep when the parade sliced through the middle of our small city, about a block from our bedroom window.  The marching band would wake us and we'd roll our eyes at the clock, pull the covers over our heads, complain about such an early hour.
Now we’ve been up long enough to watch two episodes of Wild Kratz, play eighty five games of Tenzi and seventeen rounds of Black Jack, devour several bowls of cereal and drink multiple cups of coffee before we’re all dressed and sitting curbside, waiting for the police motorcycle to clear the way.
We told the boys about what a special holiday it is, tried to squeeze in sentiments regarding courage and sacrifice between lectures about how we can't always run out into the street or take candy from strangers.

5.21.2015

he's in the number grades now

I find myself thinking ahead, the way, when you're reading a really good book, you catch your eyes scanning the right page while you're really still reading the left, just to see what might happen next.
I've known, even before I held him in my arms, that if I did it right and if I was lucky, my job was to watch him go.  Since that first snuggly day I've been steeling myself for the heartache of separation.  I anticipate plenty more small departures over the years - he may vanish into friendships, sports, politics, music - but kindergarten felt like a big one.

I used to worry whether he would survive schooling with enough curiosity and creativity to design the kind of life he'd want.  I was afraid the whirlwinds and the forest fires and the comets and the magic inside him could be educated right out.

What a silly fear, arisen from a self-imposed requirement to be anxious about something.  What a privilege though, too, fretting over imaginary things, a sign that I am living a generally peaceful life.  And so is he.

He moved through the year like it was his destiny, without the feel that, for most of us, school is just a phase.  I have a sense that someday, when he is not the student, he may be the teacher.

Summer feels like some kind of punctuation, not the end of a sentence, maybe a comma or an ellipsis.  The close of kindergarten is unquestionably the end of something, but just as surely the beginning of something else.  He's in the number grades now, and looking ahead, I have a feeling I better practice using my excited voice...

5.17.2015

yard sale

In physics class, and let’s be honest, late nights at the bar, we learned about billiard balls.  How to gauge the angle and line up the shot.  How when one ball hits another, the energy is transferred.  The way, in an instant, the cue ball stops and the other ball is propelled forward or sideways or at a slant.

People can do that too, transfer energy and propel each other forward.

At the yard sale to benefit Batten research over the weekend I saw it happen.  Two ladies ready to pay, arms full of infant items, explained they were shopping for things they could donate to a shelter for women and children.  Another couple came in search of books they could add to the local library where they volunteer.  As we were loading the truck at the end of the sale, one woman asked if she could take blankets and pillows to a homeless shelter.  More than one neighbor walked over not to shop but just to make a donation.  Plenty of people said to keep their change.  These things all served as reminders that even the smallest acts of kindness have a way of spiraling into so much more.
The world needs more people like the Wendels, more people whose energy gets others moving, more people whose faith that a cure will be found helps us believe it too.  There are too many families fighting a fatal diagnosis and trying to fundraise on the side.  The Wendels worked really hard to organize this event, and it was hugely successful.  Their family pocketed zero dollars, and they'll be giving close to $1100 directly to BDSRA.  

5.14.2015

scribbles and crumbs

In the backyard, getting things labeled and organized for the yard sale, I said "Hey Tuck, I don't see your brother?"

He's over there holding that stick with the strings on the end.

"The what?  Where?  Oh, the mop!  That's a mop, you put the "head" or the end with rope in a bucket of soapy water and then push it across the floor."
Some other semi-noteworthy things the boys have said recently:

When I was a kid I went to the chocolate factory and a chocolate rabbit just caught my eye. 

Mom, I have something green with no ears and big eyes and a shell with flippers.  It’s a sea turtle!

Around the block: I bet I can win ya to the corner.

Ouch.  I stabbed my toe.

Mom, my great great great great great grandfather gave me this key.  And then he died.  He lived in a dark blue house and I loved him and I was sad when he died.  There was scary stuff in his old house, but he put it away when I visited him. 

A worm in his palm: Hey look, he’s spelling letters for me!

Mom, maybe try reading that sentence again.  Do you see the exciting mark at the end?  That means you need to use an excited voice.  

I can’t decide if I want to be in the sunshine or the sunshade.

Coming at him with the clippers: Well, I just took a haircut, so maybe you could trim my toenails next year? 

My bottom feels spicy. 

Mom, that steak came from a pig, that’s why it’s called pork steak.  And then people eat it.  Mom, you know that pig had an apple in his mouth at the tailgating party? That was funny. 

The sun is like a wheel, it’s round like a wheel and it spins. 

I don’t care about that.  

Feel free to guess who might have said what :)
And also, for the record: Despite the fact the boys didn't know what a mop was, I do clean our floors.  I use a steam mop, so it's doesn't look like the mop Tollie found outside.  They call the steam mop the hot fan vacuum because the canister part looks a little like a vacuum and because when Tuck was little we explained that it was dangerously hot, and not to get close.  It's been a hot fan vacuum ever since.

5.11.2015

the same red hair

If he came here to be a healer, if he came when he did to help us get through some monstrous grief, I am grateful, but I don’t want him to feel that responsibility for the rest of his life.
At a birthday party over the weekend a friend mentioned how much she sees Celia in him.  She’s right—those are his sister’s big brown eyes, her full lips and round face, the same red hair.

I think I believe in an afterlife, in some sort of religious sense, but I don’t have an entirely clear vision of what that might mean.  And anyway, that belief does not save me from any sorrow.  It does not keep me from missing my daughter.  I don’t want him to feel like that’s his job either.

I hope to see her again someday, but I am happy to have some pieces of her here with me now.


***If you live in Columbus and you'd like an easy way to help BDSRA, please consider donating to Mike & Mary Wendel's garage sale.  Drop off "treasures" at 5824 Thorngate Dr in Galloway this week after 5p, or shop the sale on Friday, May 15 and Saturday, May 16 from 8a-2p.  
ALL PROCEEDS will go directly to BDSRA, so that someday -soon- scientists can deliver the breakthrough we all believe in.

5.10.2015

Who could ask for anything more?

A little extra time to sleep, more hugs and kisses than I can count and a couple of homemade cards...

5.06.2015

hard sciences

We have at least five human body books around the house, each filled with more technical information than the next.  Tucker reads them all, and Tolliver recreates abstract diagrams of things like abdominal organs.
This evening's conversation began because Tollie said he liked my shirt, said he knew that was his sister on the front, said he hated that she died.  I HATE HATE HATE that she DIED, were his actual words, and I could hear his sincerity behind every syllable.

And then he said Her body died because there was trash in it, but how did the trash get there?  I heard Andy start to explain that he and I both had pieces of Batten Disease in our bodies and when we each gave a piece to one of our kids, the pieces worked together to be really bad.  To fill the cells with trash.

He's pretty much no nonsense when it comes to talking to the boys about how the body works.
He answers questions like What's a sperm? the same way he answers What's a heart? or What's a tissue?  They laugh together about words like poop, but he reminds them that bodily functions are just that, things that bodies do to function.  I mean he pretty much calls a spade a spade.  Or a penis a penis.

By using real terms I think he's building a path for more questions, helping them know there's nothing they can't talk to us about, helping them know there's nothing to feel ashamed about.  

So you both gave Celia bad pieces, Tollie repeated.

And yet the luck of our union amazes me again and again.  I watch them listen to him and am ever more glad that I married him, that they have him for a father and I have him in my life.
I want to write more, but too many feelings are bottlenecking somewhere near my collarbone, stuck between my brain and fingertips.  I'll have to ask the boys about what that could be when they get up in the morning.

5.05.2015

He caught a ghost.

He caught a ghost and I want to catch his ways.
He has the ability to surrender to every emotion and mean it.
When he wants to cry, he spares no tears.
When he smiles he throws his whole self into the arc of the emotion, laughing so that it echoes.

His proton pack is a sacred object.
He is three, so everything is sacred.

His eyes fill with wonder at the blue sky, at eighteen wheelers whizzing by, at the ants that crawl across the driveway.  At tadpoles in the neighbor's pond, at big slices of watermelon, at what might have been another ghost and at every new moment that intersects with his gaze. 
Awe at the smallest pieces of ordinary, catching on and letting go.

5.03.2015

Growth for the win

Lately everyone mentions how tall Tucker is getting, how big he's become.  And I agree.  But while he is growing I find myself in a role that seems to be shrinking.  I am trying to figure out how to be in this place of increasing witness, trying hard to be the mother he needs today, and tomorrow.

He can slip on his own shoes and buckle his bike helmet, he knows how to slice cucumbers and peels his brother's tangerines.  He puts away(ish) his own laundry and understands how the pantry works to restock the peanut butter when we reach the bottom of the jar.  He pumps strong legs on the swing instead of asking to be pushed and writes his own requests on the grocery list, watermelon and Doritos in six year old scrawl.

I can send him to brush his teeth while I clean up breakfast, the last few bloated Cheerios floating in his bowl.  I get a little frustrated when I ask him to do something five times, and then I remember that his residency is a wonderland of ideas.  I find him at the bathroom sink, lost in space.  I have to call him back to this world to get him to move the brush against his teeth, but he is capable of getting it done.
He counts to one hundred as fast as he can, adds thirteen three times just for fun.  He asks a million questions about the universe.

How many gallons of water does it take to hold up a human? Well, wait, not like a baby, like a grown up person, how many gallons?
I'm afraid I am better suited for doing dishes than talking about buoyancy and mass.

Hey, I think they were doing baseball over there, he points from the back of the car. 
Yeah, those are the baseball fields for the high school kids, I explain.
No, it wasn't a field, it was like a rectangular prism.
Oh, batting cages.  Of course.

Your eye ball is a sphere, right? he clarifies.  You just can't see the whole thing.
Yes, I think to myself, your eyeball is a sphere.  And your body is growing so fast...  And your mind is a marvelous machine.
When Tucker was born we wished mostly for a typical kid, an average athlete, the kind of boy who would earn passing grades and maybe roll his eyes at us.  He could miss curfew, try cigarettes, talk back.  As long as he was healthy, we said.

And he is.  Healthy, and growing.  Which is, when we're lucky, exactly what is supposed to happen.