Four

Almost Heaven

I feel full of so many words this week, but cannot find one good thing to say.  I may always be trying to wrap my mind around the transience, around the way people move, mostly naturally, in and out of our orbits. We're lucky when we get to spend time with someone who is as full of magic and delight as she was.  And in hindsight, I realize it’s not just about who she was, but who we were when when we were with her, the best versions of ourselves.  It was such a short time together though, and there are so few words, really, left to tell about our little girl's life.

Celia and Tucker were born two years - and worlds - apart.  
He’s missing out on having a sister, and we could let that truth bear its weight so heavily on our hearts that we miss out on what he does have.  But part of what he does have reminds us that their worlds aren't as distant as we might lead ourselves to believe.
He has such an innocent perspective on death, a sincere curiosity, an organic understanding.  It’s not scary, or weird or taboo.  He doesn't use euphemisms or avoid the topic.  He does seem bummed about not having his sister here, and he gets confused about whether she’ll come back.

We painted six rocks* for Celia, honoring her and honoring what we've lived through as people who love her.  We talked about sharing some love by scattering the rocks, leaving them places they might become surprise discoveries.  Tuck just wanted to take them to heaven.

He drew a map.

In the process of spreading out the rocks, we hope to spread awareness and to brighten the days of six unsuspecting people.  We carry her with us into the world, and this way - for one day, anyway - so might six more someone elses.
We hear her in the words that dance between the boys, we smell her in the rain, we walk with her in the sunshine and we remember, always, being alive together.   Whether we send the rocks to heaven's house tied to the strings of very very strong balloons, or we just leave them around town, it's kind of the same thing if we adhere to Tuck’s idea that we’re as close as we choose to be.

JEB
*We noticed the big, blush-colored heart rock on vacation, and were inspired to collect more.  Thanks to all three sets of grandparents for finding perfect heart-shaped rocks.

Maya's Curls will re-release the Celia headband tomorrow, an updated design with profits going to BDSRA.  We've heard that some of the earliest orders will receive a sweet surprise.

I don't mean to tell you what to do

but you might enjoy watching this:

Some of the most amazing kids are dying.

February 28th is World Rare Disease Day.
Six years ago we didn't know much, or care enough, about rare diseases. Now we know: 30 million Americans suffer from rare diseases, which impact more people than AIDS and cancer combined.*

Six years ago, almost, a child was born, our family’s dearest doll.  Although we’d asked them not to come, the grandparents and aunts ended up in the lobby of the maternity ward that day.  They passed the time making bets about when she’d arrive, how much she’d weigh, who she’d look most like.  No one wagered she’d have red hair, and everyone tossed a few dollars toward whatever they felt most convinced.  The money was to be the beginning of her college fund.  We have the notes and the cash stuffed in a clear sleeve in her baby album, right next to pictures of the waiting room festivities.  On the next page are photographs of her pink, wrinkly body.  Brand new, she seemed to epitomize the possibility of everything.  Family flooded the delivery room, and no one really cared what color her eyes were or how many inches she was in length.  She was perfect by every measure.

About six years ago, a young teen in Nevada spent family vacations wandering scrublands prospecting for uranium and shopping secondhand stores for lab equipment, hoping to build the fusion reactor he thought could make his grandma's radiation therapy more effective.  His grandmother was dying of cancer, and because they lived in a remote area, it was hard to get radioactive treatment to her before it decayed.  He did develop an effective medical isotope application, and then he set his sights on detecting explosive materials in shipping containers, the easiest entry point for weapons of mass destruction.  He's currently working with the Department of Homeland Security on a highly sensitive nuclear detection system.  "Someone like Taylor,"  said the then under Secretary of Energy Kristina Johnson, "comes along maybe once in a generation.  He’s not just smart, he’s cool and articulate.  I think he may be the most amazing kid I’ve ever met.”**

Some of the most amazing kids are dying.  And some of them are developing treatments and saving lives. 

*globalgenes.org
**the boy who played with fusion

Watch Out

Driving to preschool this morning, Tucker exclaimed Know what fore means, Mama? In golf, fore means watch out!  I acknowledged his newsflash and then told Tuck that while he built cardboard castles with his buddies Augie and Conrad, I planned to take Tollie to story time at the library.  Will you do me a favor, Mama? Will you get me a book about blimps and another book about knock-knock jokes?

Tucker’s mid-afternoon individual attention has been affected recently as we’ve tried to encourage Tolliver to adjust his nap routine.  It’s not been awesome, but it's part of what we signed up for when we decided to procreate.  This afternoon Tucker and I did get to spend some quiet time learning a few jokes and reading about floating airships.  I left Tuck to finish watching the footage of a blimp we'd found online and ran to refresh my coffee.  Minutes later I heard him laughing and realized he'd clicked through to something else on You-Tube, something not particularly appropriate.  I heard the word bastard.  I'm not sure what he heard.
It’s happened before, he's clicked on something he shouldn't have.  We’re certainly not winning any media supervision awards.  It’s a high charge and an awesome privilege to hang with these boys every day, and we're doing the best we can.

At some point in the Betz family’s evolution, maybe when Andy was little, Ciao was interpreted as watchout, and occasionally the Betzes still say that to one another as they part ways.  Watch out.  It serves a fine goodbye. 
And as we prepare to leave three behind, I feel like four is already warning us to watch out. 
JEB

like most parents

We want our boys to know the most important bit, the thing above all else, is to do the best they can.  We want them to know when to say yes.  To know when to wear black socks and when to ask for directions.  To know how to make a bed and how to make a little kid laugh, how to change a flat tire and how to write a love note.  To realize that feelings like loss and sorrow don’t separate them from the world, but bind them to it and to each other.  To learn from each other and to love each other.  We want them to be kind and to be silly.  To understand that making a difference is more important than making a point, and that if they make a difference their point will be clear.  To use their hands and to raise their voices.  
We know they might raise some eyebrows and maybe even some hell.  We know there is no right way to raise them, but we want to do our best.

JEB

Current

I saw her face flash in his this morning, when his fingers were accidentally pinched in the dutch door hinge.  Fat tears sprang from his eyes and his features folded into the pain.  A current swept through me, holding his body and remembering her cries.

He practiced jumping into the pool today, shocking himself with brave capability.  His whole body vibrated with energy as he realized, proudly, that the only thing sinking was his anxiety. 

At dinner we all did our best not to let sparks fly.  He didn't want what we offered, and we just wanted him to try one bite.  We tried, hard, not to snap.  We all know what it's like not to get what you want.

One way to explain electricity to little people is by using an energy ball -- if everyone holds hands, the ball lights up and makes noise.  If there's a break in the circle, or if the wires in a circuit aren't "holding hands," nothing happens.

Another way to explore circuitry might be to let the little person tear apart old greeting cards.

Something's always happening here, even when it feels like our circle will never quite be complete.
JEB