because hope

I feel like, through Batten Disease, we faced some of the hardest things a parent might ever encounter.
And then I think about having a second child with the disease.  How do those families manage?
Or an older child with the disease.  How do you even begin to explain to your child that she is dying?

The last day of February is World Rare Disease Day.
And a week from now, March 7th, would've been Celia's 9th birthday.

We've been celebrating what would have been and spreading Batten awareness with a note similar to the one below, sharing her story along with small, copper feather keychains.

Remembering her “with feathers” this year.
Because hope is the thing.

Feathers, from any bird, are important in Native American culture, used often in medicinal rituals. Feathers are believed not to belong to anyone but the birds from which they originate - creatures, small but fierce, who are members of the upper world, the space that separates heaven and earth. 

Our family believes in a cure the way some folks believe in a higher power.  It’s out there, somewhere.  We’re asking you to believe with us.  Our daughter died, but the future deserves our faith.

Feathers lift, insulate and protect. For some, they are a symbol of reassurance, a reminder of our eternal connection to this world.  They can be used in natural magic to promote change. Feathers provide inspiration to soar to new heights. 

A cure for Batten Disease will be found.   Researchers will deliver the breakthrough we believe in. We’d love for you to believe in it, and back it, too.
To help fund vital research, visit www.bdsra.org

A disease may be rare, but hope should not have to be.
You don't need a feather keychain to carry her story in your heart, and to help us make hope the thing.

If pictures had sound

There are apparently sound effects for smashes and crushes and wheelies and donuts.  And jumps and flips and stunts and wrecks.  And the boys somehow know how to make all of those noises...

still taking notes

When I was three I tried to be cool, but I didn’t really know how to be yet.

So yesterday was groundhog day. Is today warthog day? 

Maybe this meatloaf should be called “meatlove.” 

Gesturing in the corner of the nursery, just after we set up the crib:  I know, we can build a wall here around it, with a roof right on top, so if the baby cries me and Tucker won’t have to listen to it.

Indians can do anything they want, right? Because there are no rules in Indiana?

What if the Statue of Liberty had a boyfriend?!

Pointing: Mom, I need a bandage on my number one finger. 

I didn’t have a great day at school. Someone was chasing me and I asked her to stop and she didn’t and it made me fill with tears.

Can we go to the Grand Canyon today?

Using an old flip phone to pretend: Wanna play Robo Rainbow Pony Googolplex Four?  It's a new level, and he has to eat all the cookies to earn points and transform and make his muscles stronger.

I wish there was a popsicle guy who could just shoot out popsicles to us when we wanted one.

In response to more scratches on the television screen, the first he admitted to making with a metal airplane toy:  Maybe it was a woodpecker or a squirrel this time. 
After explaining that we had not seen any animals in the house: Well then maybe it was a termite, they’re mega small.

I know what construction workers could use if they didn’t have ladders.  They could use two plungers, like suction cups, to climb right up the wall.

Upon picking him up at preschool, and explaining that we were, as usual, going to walk to get Tucker: I hate winter! And Halloween and November and Mondays.

Mom, your legs have fur pokes on them.

Giving another anatomy lesson:  That’s your kidney, and those are your leg pits. And these are hub caps, I mean knee caps.

In a rare tender moment: Tucker, guess what? You are the heart of all my love. 

golden boy

Tucker will turn seven on March 7th, making this his "golden birthday."
While I imagined gold balloons and shiny place settings, he immediately translated the theme to mean the element Au on the periodic table.
Tuck wanted to do science experiments and to build things.
And he wanted his cake to look like a real gold bar, so the baker used edible 24K leaf.

We partied a little early, hoping to help him feel well-celebrated before his littlest brother arrives.
Under the direction of a master TINKERer, guests shaped gold wire onto plaques and designed golden trophies and made sparkly slime and shiny pet nuggets.

at 4

Tollie seems to be so full of ideas that he refuses to waste an entire night sleeping.
Lately we see him beside our bed at 4am.

Early mornings are relatively slow, but it doesn't take long before he's full blast, no chill at all, filling the day with magic and mischief and mayhem.

One minute he is Spiderman, legs through the arm holes of the costume, face mask askew, careening down the stairs and climbing the walls.
The next minute he is under the bed, dousing an entire Playmobil village with water because there is a raging inferno.

And then he is near tears because he needs to pee and is stuck inside some superhero gear, or near tears because he can't find the right Lego guy, or near tears because he's tried, or near tears because his favorite swim shirt is not clean.

I know he is not my own personal dress up doll, and I am in no mood to play fashion police.  But neither am I in a mood to wash the favored shirt five days in a row.  Or to listen to him wail about how horrible life is without the right soft shorts.

Occasionally he provides a nonchalant but persistent No when I ask him to help pick up blocks or help fold the costumes that litter his bedroom floor or take his plate to the sink.
Listening may not be his forte, I think, as I remind him of his promise, not more than three seconds ago, to stop pinching his brother.

Speaking is, though.  He tells stories that go on for days and explains the world using words like edible and leverage and hypothesis and antagonizing.

Once in awhile he's quiet.  And I do know to notice when the kind of quiet he's being has changed, when he becomes quiet in an ominous way.  When he has drawn, blue marker directly on lowest white shelves, an entire science laboratory.

Some days parenting feels like a pop quiz, with an essay portion at the end.  And I've missed too much class.
I read him two bedtime books, hoping to at least earn some bonus points.
I kiss him goodnight and cross my fingers that I got some of it right today.  And that I won’t see him again before 6am tomorrow.

you are these things, and more

You are my sidekick, you are my dreamer
You are my superhero, you are my scientist
You are my architect, you are my musician
You are my celebration, you are my bucket list

Mine

living loud

Tonight after dinner the boys were going crazy.
They are generally rather loud.  I mean, I'm sure our house registers as just regular raising-small-humans loud, but tonight's noise level made it difficult to find any flash of sanity amidst the mayhem.
Tonight the volume was so high I thought I might actually Van Gogh my own ears.

Instead I asked the boys to find a quieter activity while I cleaned up the kitchen -- Andy spent the day making chili, and dinner was delicious, but there were about thirteen pots to wash and the entire stove and butcher block area to scrub.  And I needed to reclaim some peace.

Tucker climbed down from his doorway perch, picked up a book about math and immediately became immersed.  He soon moved to the desk where he could work on making factor trees.
And Tolliver sat on the couch reading out loud, using a pleasant, inside voice.  He ran into the kitchen to ask for help on certain pages, but got through two short stories, mostly on his own, mostly a result of memorization from repetition.  Still, he was clearly feeling very proud of his emerging language skills.

We put the boys to bed a short time later and as I watched their sweet moon faces drift to sleep, I could actually hear the voice in my head, the one that's hard to hear when they are awake and active, whisper something about being the luckiest mom in the world.

random good things

We saw a grown up movie over the weekend.  Like at the theater.

Tollie wore the same shirt four days in a row, a neon green swimming top.  It got washed once during that time.

The boys played nicely together, a game around a wooden block city.  The garbage truck accidentally hit and killed the mayor, who had actually already been shot and killed not long ago, on Presidents Day.  I overheard Tucker tell Tollie that it'd be okay, that the mayor would go to extra heaven.  I interrupted to ask for clarification.  Well, when you die in heaven, you get to go on to the next one.  It’s even better. 

At Andy's birthday lunch with family, Tollie ate the slice on his plate, and then stretched his fork toward the middle of the table and straight into the remaining cake.  I guess everything is fair game when you're four.

Andy texted from work recently about feeling excited to meet this baby, about this time being different.  I hadn't given it much thought, but he's right:  The minute we were discharged with Tucker we drove directly to the lab at Children's hospital, watched them prick his heel, and settled in for a weeklong wait, wondering if he would die.  With Tols it was a different kind of waiting.  Early on we learned he was well, but as he was on his way into this world his sister was on her way out.  Our joy was mixed with tremendous sadness.  Things are good this time, and it feels like they may only get better.

We spent part of one weekend afternoon at the park.  Tollie wore his swim shirt, and none of the boys wore a coat.

The four of us ended up on the couch at one point, watching Superbowl commercials.  Tollie commented about how special it was for all of us to be sitting down together.  He's right, that's definitely a rare occurrence.

That morning Andy and I sat on the same couch and watched three uninterrupted episodes of something mindless on Netflix.  I'm not sure that's ever happened before.

Earlier in the week Tuck had asked for the ingredients to make a treat for Andy, a white chocolate Chex mix he'd discovered at Christmas.  He took some of the mixture to his grandparents, who asked about how he made it.
He said we just mixed a bunch of random good things.
Kind of like the past few days.

flawless

I feel like Tolliver may be known, mostly, for two things: the very best shade of red hair there ever was, and waking up way too freaking early every day.  Let’s talk about his hair.

his birthday

His birthday, my wish: to wake up and share wonder and face terror and see growth side by side, to practice parenting and patience and faith as a team, to make out and mess up together for many, many more years.

four year old fashionista

In December Tolliver adopted a wake up and get dressed routine, shorts and a t-shirt, all day every day.  Until we have to leave the house -- and then, invariably, a bit of resistance to putting on pants.

At bedtime earlier this week, ready to wind down after a bath, he was not at all interested in pajamas.  He chose dress pants instead, at least one size too small, with a bow tie and glasses.  I am trying to understand.

Tollie has strong opinions about what he wears, and I am not interested in daily battles over his wardrobe.  I know his preferences are not worthy of a clinical label.  My real objection stems less from things like the shorts themselves, but more from the idea that he might be cold.  Or that other parents are judging me.

He's not cold.
He's also not exactly the heart of fashion.
But he is happy.