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

Chef BoyarT

His brother mostly just pinballs around the kitchen, but Tolliver wants to cook.  Sure, he whacks at balls with the miniature whisk and bats around balloons with the wooden serving spoon.  And he puts pots on his head.  But he can also stir gently and pour accurately and push buttons on the microwave.  He says “hot, hot” and blows before taking a bite.
If one of us is cooking,  he is there beside us, pulling our pantleg and asking to help.  And if one of us is not cooking and he is hungry, he practically takes matters into his own hands.

JEB

Photos from the phone

1.  on Gorda Peak, overlooking Necker Island
2.  #smallplane
3.  so much sunshine
4.  so much help looking after our small people  via ccoyle9777
5.  growing a gator while we were gone  via rht3627
6.  glad to be back in his own crib

7.  shootin' for three
8.  Happy Birthday, Andy!
9.  warm enough for a quick winter picnic
10.  tub-sicles
11.  signing Valentines
12.  spooning peanut butter

13.  lots of creatures to hold at OSU's BioDiversity nueezum
14.  #timeoutchair
15.  not a big fan of the Columbus Art Museum
16.  happier at the "inside playground"
17.  basement bounce house
18.  first ChuckECheese adventure  via ccoyle9777

Reminder

There’s a faded yellow paper tucked into the back pocket of my baby book,  worn soft from the rereadings.  Mom must’ve grabbed the nearest legal pad when she perched on the top step, right outside the bedroom my sister and I shared, and transcribed our conversation.

June 6, 1982 “A Reminder” 
Jenny and Katie “swam” without water wings today.
Katie has worn “biggies” for three days in a row, wearing diapers only to sleep.
Tonight at bedtime we read a story, as usual, and after all the hugs and kisses and marking off a day on Jenny’s calendar, I eavesdropped from the stairs.  Katie in her bed, Jenny in her bed.
J: Goodnight, Katie.
K: Goodnight, Jenny... pause... Jenny, I don’t like you.
J: Yes you do!
K: No. I want you to say sticks and bones.
J: I’ll say it two times and that’s it: Sticks and stones may break my bones, but words will never hurt me (sung slowly, twice)
K: Jenny, I still don’t like you.
J: Katie, I’m not saying it anymore, I’m asleep!

The words are from a time I don't much remember, and it’s a blast to get a tiny glimpse of myself when I was about Tuck's age. I remember lots about my childhood, the days when the television remote crossed the room on a cord and the laser printer was the size of luggage and the computer screen only displayed shades of green.  But I don't really remember me.

Sometimes I question why I spend so much time writing and posting photographs, although it does cheer me to scroll through the events of the year and to be reminded that our family is richly blessed.  This place is like a baby book, a memoir of the most incredible years of our lives.
There are doubtless better stories than the ones I write, events I’ve missed recording or escapades I’m not wise enough to have known are important for posterity.  But writing forces me to notice details, provides an enchanting way to trick myself into being present. 

Recently Tucker said Mama, I need you to come down in the basement with me because it’s dark down there. 
I can come in a just a minute Buddy, or you can be brave and walk to the bottom of the steps and turn on more lights.
Okay Mama, I will, but can you watch me be brave all the way to the bottom.

Tuck may not remember the paper fan he wedged between forks and spoons in the silverware drawer, or the pretend pocket watch he keeps careful track of, or the "mamifying glass" he took to the grocery to inspect all the fruit, but I want to.  He won't know that we temporarily lost some important paperwork from the mail pile because he shoved it into his own manilla envelope of "important things."  He might forget the details of his little boy-hood, that he has the appetite of a wild animal, the verbal skills of a professional public speaker, the soul of a poet.  He won't realize how brave he's always been.  Unless he, hopefully, cares to read here someday.  And if he doesn't, I always will.

JEB

All you need is

I don’t care who my children love, or how they love. 

I just want them to find some and to give some. 

photo credit: Atelier

At Art

Every day these boys look a little more like a miracle to me.

 JEB

What Matters

It doesn’t matter, we say, he’s not dying.  We’ve always said that about the boys, whatever it is it doesn’t matter.  It doesn’t matter if he never speaks, it doesn’t matter how long he wears a diaper.  It doesn't matter if he talks too much, it doesn't matter if watches television. 
It doesn’t matter. And then in the next breath, in that way that we categorize our children even as we tell ourselves we shouldn’t, we make it matter.  How many animal sounds do one year olds know?  I wonder if he should be able to write his name better?  He seems really coordinated with that hammer, doesn't he?!  Do you think he should understand money?  Is this fever something to worry about?  Sometimes we get hung up on things that really aren't matters of life and death.  Not much is, actually. 

A few weeks ago an old lady at the library judged him to be bossy, saying "He likes to be in charge of everything, doesn't he?"  Oh dear, she's right, he does, I worried for a moment.  And then I remembered he's just three. 

"He's an intense child," someone recently suggested.  The comment certainly resonated, but it did not withstand scrutiny.  And if it did, it wouldn't matter.  
They're living.  That matters.

JEB

Shut Eyes

Tolliver has an inadequate respect for tomorrow.  Lately anyway, he's not sleeping through the night.  And I'm not complaining.  I mean, night-waking falls squarely in the realm of universal baby problems, right along with nap strikes and pacifier addictions.  And squarely in the realm of universal is where we'd like to be.  Well, there and in bed at night.

Really though, Tollie's such a sweet boy.  He frustrates easily and throws top notch tantrums, but he short circuits back to happy pretty quickly.  He uses a few words, some of which he even puts together into short sentences (Hi Dada was Celia's first sentence, too!).  He shakes his head ridiculously hard, like an all caps no means NO, and has several other gestures which he uses to mean all sorts of serious business.  He's able to identify body parts, poking eyeballs and tickling toes.  He turns switches on and off and opens and closes cabinets and, in general, occupies plenty of time with repetitive practice.  He's very curious but not especially cautious, and insists on doing things like walking up steps and sitting on bar stools just like his brother.  He imitates at least five animals (the elephant is my favorite!) and he uses a spoon and he brushes his teeth.
He's like a ticklish little container of the divine, Tollie is, with generous cheeks and glittery eyes.  And with a mama who doesn't mind shutting her eyes to a little sleep deprivation, especially when he opens them to so many other good things.
JEB

A Star

Although his ad did not run during the Superbowl, Tolliver's first commercial debuted over the weekend.  He makes an appearance at the 43 second mark.

Also, we've admired Amy Parrish's photographs for years (almost as much as we've admired her kindness.)  Her husband Ryan has been behind the camera recently, and was brave enough to shoot Tuck and Tollie as his first "real" clients.  We may be partial, but we're also impressed!

Never Finished

Tuck dumped a pillowcase of rocks out on the floor and lined them up. Mama, look! Excuse me, Mama? Aren’t these cool! They are smooth and colorful and very beautiful to look at. Look! I was busy collecting magnets in one hand and gears in the other, face toward the floor, focused on clearing a path.  I gave his collection a quick glance.
Later Tuck spread small plastic shapes across the counter.  I’m analyzing like a scientist. That means I’m studying. Let’s make animals and food and vehicles in groups. That means I’m classifying. I should have said Yes, yes you are a scientist, yes you do make excellent observations.  I should have rerouted my own observations from crumbs on the counter and dust on the sill, I should have quit categorizing dirt and put Tuck in first class.
May Tollie have a bite of your burrito, I asked, trying to get both boys fed quickly so we could move on to the next thing.  No, his mouth is too small – look, his mouth is only one two three four, and the burrito is one two three for five six seven eight nine ten.  He'd been moving glacially all morning and I was trying not to lose track of the list of things I wanted to accomplish, trying to get us all out the door before someone needed their next meal.

There's a difference between being busy and being overcommitted.  Everything changes when you realize there is exactly enough time for the important stuff.  When the things you need to do aren't happening, it may be because you value what is happening instead.

Tuck has been measuring a lot lately, using numbers to prove a point.  Hey Mama, I put the fragile shells on top of the table so Tollie can't reach them.  Because the table is one two three four five six seven and Tollie is only one two three four, he'll say, using his hands to demonstrate height.
Tuck's logic was irrefutable, almost.  I slowed down, made Tollie his own, smaller, burrito.  Decided that the next thing wasn't all that important, determined to pay more attention to now.  Talked to Tucker about units and explained that I admired his thinking.  Encouraged measuring, encouraged sharing.

There's this thing about never being finished, and that’s that it’s most often okay.  He's growing fast, running out of clothes that fit, and I'm running out of time.  If there's one thing that's never finished, I hope it's my work as his mother.  I can hardly wait to love him forever.

JEB

finding, filling

Vacations are like vessels, aren't they, just waiting to be filled.  For us the days yawned wide, beginning well after the sun came up and ending whenever the garage doors of our eyelids fell shut.  And the middles filled right up with all sorts of adventures.

We serendipitously dined at one of the finest restaurants in Puerto Rico, a split second decision to dive through the front door in order to avoid being trampled by a spontaneous street parade, only to learn later of the establishment's top rating.
We also somehow wound up in a cockfighting arena and watched, engrossed, as money flew faster than chicken feathers.
In Virgin Gorda we accidentally tasted fruit from the third most poisonous plant on the planet, and later shimmied through a rocky maze to take a sunset walk along what must be the most exquisite beach in the Caribbean.

Ordinary days are vessels too, just waiting, if we're lucky.  We're glad to be filling ours at home again with the boys. 

Creatures from the sea for Tucker.  

JEB