It’s impossible not to imagine what our family might have looked like with a different configuration.
We pine for a carefree past with our perfect first born and picture a fearless future with our growing girl. But when she rested in our laps we didn't do too much of either, because when we held her, we tried mostly to be present with the real daughter who was right in front of us, tried so hard not to miss the very thing we wished we would not lose.
She no longer takes on a sharp shape in our family’s silhouette, but she’s there, floating somewhere on the film.
The first of June marks the annual Batten Disease Awareness weekend. Our family will attend the Greater Atlanta Girls' Choir concert tomorrow, with gratitude to the organization for increasing awareness and for donating funds for research.
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5.30.2013
5.28.2013
18 Months
Dear Tolliver,
You're a year and a half old. And you're amazing. We've compiled a list of eighteen things we love about you right now. Know that there are at least eighteen million things we haven't included. Know that you are loved. You are loved - above all else - just for being you.
We love:
1. The way your smile opens wide the window of your face.
2. The way the wind fingers your hair, the way it raises the part right down the center and makes you almost resemble a rooster.
3. The way the spring sun sent a faint spattering of spots across your nose and the way the bright blue sky touches your skin and leaves soft pink marks.
4. The way your liquid Disney eyes claim all the wonder in the world.
5. The way you nod your head yes. You squeeze your eyes shut, touch your chin to your chest and shake so it seems as if your whole body is sending an affirmative message.
6. The way your smooth, dark voice erupts. If chocolate were a sound, you could frost a cake with words.
7. The way you answer the question What is your name? with a very confident Betz!
8. The way you say uh-oh, stretching out the word like a rubber band.
9. The way you seven dwarf through the day -- happy, sleepy, bashful, grumpy. Mostly happy, though.
10. The way your laughter lifts our spirits and the way your light lends us strength.
11. The way you, despite being built a bit like a cinderblock, move -- half-moon belly ahead of hips, feet that ferry you almost as fast as you'd like to go.
12. The way, with you, walks become adventures and destinations become delights.
13. The way you like to color. Paper, your shirt, your toes, the floor, each with equal enthusiasm.
14. The way you ride the wooden crane -- for fun, for work, for mischief.
15. The way you count, not out loud but with your fingers - one, two, three - before you jump.
16. The way you've, just recently, started humming thank you. When we hand you a toy or offer you a treat or wipe your nose with a tissue, you sing-song two little notes of appreciation.
17. The way you make your brother a brother. All the ways you're so different from him, and all the ways you're so the same.
18. The way you live tucked up right against the limits of all your growing abilities.
Oh, sweet Tollie. We love you you for lots of reasons, and we'll love you forever.
Mama & Daddy
These pictures are a few weeks old but we chose them because they're reminiscent of your brother Tucker's 18 month post.
You're a year and a half old. And you're amazing. We've compiled a list of eighteen things we love about you right now. Know that there are at least eighteen million things we haven't included. Know that you are loved. You are loved - above all else - just for being you.
We love:
1. The way your smile opens wide the window of your face.
2. The way the wind fingers your hair, the way it raises the part right down the center and makes you almost resemble a rooster.
3. The way the spring sun sent a faint spattering of spots across your nose and the way the bright blue sky touches your skin and leaves soft pink marks.
4. The way your liquid Disney eyes claim all the wonder in the world.
5. The way you nod your head yes. You squeeze your eyes shut, touch your chin to your chest and shake so it seems as if your whole body is sending an affirmative message.
6. The way your smooth, dark voice erupts. If chocolate were a sound, you could frost a cake with words.
7. The way you answer the question What is your name? with a very confident Betz!
8. The way you say uh-oh, stretching out the word like a rubber band.
9. The way you seven dwarf through the day -- happy, sleepy, bashful, grumpy. Mostly happy, though.
10. The way your laughter lifts our spirits and the way your light lends us strength.
11. The way you, despite being built a bit like a cinderblock, move -- half-moon belly ahead of hips, feet that ferry you almost as fast as you'd like to go.
12. The way, with you, walks become adventures and destinations become delights.
13. The way you like to color. Paper, your shirt, your toes, the floor, each with equal enthusiasm.
14. The way you ride the wooden crane -- for fun, for work, for mischief.
15. The way you count, not out loud but with your fingers - one, two, three - before you jump.
16. The way you've, just recently, started humming thank you. When we hand you a toy or offer you a treat or wipe your nose with a tissue, you sing-song two little notes of appreciation.
17. The way you make your brother a brother. All the ways you're so different from him, and all the ways you're so the same.
18. The way you live tucked up right against the limits of all your growing abilities.
Oh, sweet Tollie. We love you you for lots of reasons, and we'll love you forever.
Mama & Daddy
These pictures are a few weeks old but we chose them because they're reminiscent of your brother Tucker's 18 month post.
5.27.2013
5.22.2013
Family Tree
Batten Disease has been hitchhiking, deep in the roots of our DNA, for centuries.
This tree, planted last year to memorialize Celia, was transplanted recently to root her to our land, to fix her, somehow, to the place we live. The tree is small and not yet sturdy, and after something so precious was lost, there’s healing that comes with trying to help it thrive here. The tree fills up a bit of empty space, lessens the ache, allows a little piece of our little one to live on.
*The Greater Atlanta Girls' Choir will give a concert to remember Celia and to benefit Batten research next Friday, May 31 -- 7:30 at Broad Street Presbyterian Church, downtown Columbus. It's free, but any offerings given will go straight to BDSRA.
**Special thanks to Gary for taking care of the transplant.
This tree, planted last year to memorialize Celia, was transplanted recently to root her to our land, to fix her, somehow, to the place we live. The tree is small and not yet sturdy, and after something so precious was lost, there’s healing that comes with trying to help it thrive here. The tree fills up a bit of empty space, lessens the ache, allows a little piece of our little one to live on.
*The Greater Atlanta Girls' Choir will give a concert to remember Celia and to benefit Batten research next Friday, May 31 -- 7:30 at Broad Street Presbyterian Church, downtown Columbus. It's free, but any offerings given will go straight to BDSRA.
**Special thanks to Gary for taking care of the transplant.
5.20.2013
Refuse
The boys gather berries and bugs, but they also gather bits of junk -- dark and glittery, jagged and teeny, shiny and soft, our pockets fill. As little palms pack with rubble, I remember that things can be beautiful whole or broken.
It's the eye of the beholder. It's the face connected to the fingers that clutch the valued debris. It's the irresistible urge to collect, the instinct to dismantle and the vague notion that everything can be humptied together again.
There was a television in the alley last week, before bulk pickup day. There's a pile in the garage that hasn't made it to the electronic recycling location. There are fans and funnels, old cameras and broken bike seats and ancient radios. There are tools in rusty coffee cans, trinkets in mason jars and ideas monkeying in young minds.
Tuck oversees the whole orderly mess, rummaging through parts and tinkering with pieces and with thoughts of turning trash to treasure.
Who are we to refuse?
It's the eye of the beholder. It's the face connected to the fingers that clutch the valued debris. It's the irresistible urge to collect, the instinct to dismantle and the vague notion that everything can be humptied together again.
There was a television in the alley last week, before bulk pickup day. There's a pile in the garage that hasn't made it to the electronic recycling location. There are fans and funnels, old cameras and broken bike seats and ancient radios. There are tools in rusty coffee cans, trinkets in mason jars and ideas monkeying in young minds.
Tuck oversees the whole orderly mess, rummaging through parts and tinkering with pieces and with thoughts of turning trash to treasure.
Who are we to refuse?
5.19.2013
He says:
Holding up Sophie the giraffe, whom he'd dressed up and renamed: Hey, today is Long Necky's birthday! She's wearing hats and necklaces and she's playing the kazoo.
Under the piano, where he'd hidden for a self-appointed time out: My heart says it's a little bit sad and a little bit mad. Reaching up from under piano to slowly thump low keys: And it sounds like this.
Using K'nex construction toys, flying his latest creation in front of my face: Mom, look, it's a lighthouse fish rocket!
Working on his Leap Pad while I worked out nearby and answered eleven billion spelling questions: Mama, you can spell and exercise at the same time!
At the dining room table, finishing up a game all by himself: I win! I make a great team!
Looking at his cupped hands which held the four wriggly worms he'd just caught, and hollering at me across the yard: These guys have some crazy to run out!
Standing at our bedroom window, gazing up: When the clouds get pink then it's almost time for bed.
Reaching for Tollie's hand through the crib slats and kissing his fingers: I'll see you tomorrow, Tollie. And I love you.
Under the piano, where he'd hidden for a self-appointed time out: My heart says it's a little bit sad and a little bit mad. Reaching up from under piano to slowly thump low keys: And it sounds like this.
Using K'nex construction toys, flying his latest creation in front of my face: Mom, look, it's a lighthouse fish rocket!
Working on his Leap Pad while I worked out nearby and answered eleven billion spelling questions: Mama, you can spell and exercise at the same time!
At the dining room table, finishing up a game all by himself: I win! I make a great team!
Looking at his cupped hands which held the four wriggly worms he'd just caught, and hollering at me across the yard: These guys have some crazy to run out!
Standing at our bedroom window, gazing up: When the clouds get pink then it's almost time for bed.
Reaching for Tollie's hand through the crib slats and kissing his fingers: I'll see you tomorrow, Tollie. And I love you.
5.16.2013
from the phone
1. before the game
2. in the alley
3. under the sun
4. at the horseshoe
5. to the hot dog store
6. on the steps
7. aside the grill
8. after the smoker
9. in the cup
10. at the swamp
11. from the bush
12. to the teachers
13. with the scraps
14. from the archives
15. atop the animals
16. against the glass
17. at the nursery
18. in the yard
2. in the alley
3. under the sun
4. at the horseshoe
5. to the hot dog store
6. on the steps
7. aside the grill
8. after the smoker
9. in the cup
10. at the swamp
11. from the bush
12. to the teachers
13. with the scraps
14. from the archives
15. atop the animals
16. against the glass
17. at the nursery
18. in the yard
5.15.2013
Lots of looking down and lots of looking up
He points, like a hunting dog, at things I might not have seen, making me much less dull to wonder. An airplane! A squirrel! The sparkly spot on the sidewalk!
He’s a slightly tipsy tour guide, ushering us through otherwise ordinary days, turning bland and boring into brighter and more interesting.
He’s a slightly tipsy tour guide, ushering us through otherwise ordinary days, turning bland and boring into brighter and more interesting.
5.13.2013
Turning pages
I woke an unsteady mother. I poured too much cream into my cup, my lips forming a thin line, about to break. If risk is the price of admission to parenthood, devastation is the worst souvenir.
She made me a mother. Nothing made me happier than that.
I loved her like there was no tomorrow. And then one day there wasn't.
Nothing makes me sadder than that.
There are moments when it feels like my spirit was severed from my body with hers. My daughter is gone. And so with her, her mother. Not me, entirely, but the part of me that was her mom. That part of me left the room with her last year.
And so I awoke thinking of that part, the mother who went missing. I gulped caffeine and put on my game face, coffee sliding like a coin into a slot, attitude slower to cooperate. I may not have been a great mother this morning, but I made up for it this afternoon. I did press problems illustrated with iPhones and donuts, and raced dollar store matchbox cars under wooden block bridges. I made dinner as requested and doled out brownies before clean plates. I read bedtime books like words were our second dessert. I stroked foreheads and scratched backs and turned pages about trucks while I tried to still the longing for Madeline and Eloise and Pippi with the same bright red hair.
I know this collection of words cannot transform into visions of Celia. Still I write, partly out of compulsive habit and partly out of cautious hope. I trust she cannot be forgotten, but I'm still trying to figure out how to bring her forward through time with me.
I loved her like there was no tomorrow. And then one day there wasn't.
Nothing makes me sadder than that.
There are moments when it feels like my spirit was severed from my body with hers. My daughter is gone. And so with her, her mother. Not me, entirely, but the part of me that was her mom. That part of me left the room with her last year.
And so I awoke thinking of that part, the mother who went missing. I gulped caffeine and put on my game face, coffee sliding like a coin into a slot, attitude slower to cooperate. I may not have been a great mother this morning, but I made up for it this afternoon. I did press problems illustrated with iPhones and donuts, and raced dollar store matchbox cars under wooden block bridges. I made dinner as requested and doled out brownies before clean plates. I read bedtime books like words were our second dessert. I stroked foreheads and scratched backs and turned pages about trucks while I tried to still the longing for Madeline and Eloise and Pippi with the same bright red hair.
I know this collection of words cannot transform into visions of Celia. Still I write, partly out of compulsive habit and partly out of cautious hope. I trust she cannot be forgotten, but I'm still trying to figure out how to bring her forward through time with me.
5.12.2013
5.09.2013
5.08.2013
Come out, come out
The game that Tolliver loves most right now is hide-and-seek, probably because it has so much in common with the universal baby favorite peek-a-boo. Or maybe because Tucker loves it too.
The thing is, Tollie is not a proficient hider. At all. He plays the game like most one year olds, under the If I can’t see you, you can’t see me rule. There may be nothing cuter, though, than a little bottom waving around in the air, head just partway under the table. I spend a minute stomping around, pretending that Tollie is very hard to find, wondering aloud if he’s behind the curtain or under the stool or inside the closet, peering beneath cushions and peeking around corners. By the time I actually "find" him, even if his body parts haven't been sticking out of his hiding place, he’s been giggling more than enough to give himself away.
The thing is, Tollie is not a proficient hider. At all. He plays the game like most one year olds, under the If I can’t see you, you can’t see me rule. There may be nothing cuter, though, than a little bottom waving around in the air, head just partway under the table. I spend a minute stomping around, pretending that Tollie is very hard to find, wondering aloud if he’s behind the curtain or under the stool or inside the closet, peering beneath cushions and peeking around corners. By the time I actually "find" him, even if his body parts haven't been sticking out of his hiding place, he’s been giggling more than enough to give himself away.
5.07.2013
Impress
Tuck was eating pepperoni for lunch when he showed sincere interest in simple addition. He spread the food across the counter, little pepperoni and "big pepperoni" (salami), and counted them all together. Mama, I have firteen pepperonis! You gave me ten and free, that makes firteen!
"Yes buddy, I said, ten plus three is thirteen. Great adding!"
But I think he heard "press" instead of plus. He was touching each pepperoni as he added, kind of like pressing a button, and that term stuck around much longer than the greasy circles I wiped clean when he was finished eating.
More recently Tuck's been using his fingers to find sums, and scratching marks on paper for bigger numbers. We make up stories about how many fish he and Poppy catch together or how many grubs he found this week, we add cucumber slices and Angry Birds and finger puppets and Toy Story characters and we add all the Nem&Nems he eats for dessert.
Tonight at bedtime Tucker asked to do some press problems instead of reading books, so we sat at his desk with crayons and paper and added popsicles and alligators and grapes. As it got close to eight o'clock Tuck said Mama, this is awesome, but maybe I could get in bed now and you could scratch my back for a little moment.
I know there will be lots of little moments when Tuck needs to do quick math, to calculate a tip or to double a recipe or to confirm correct change, and I'm glad he's gaining number knowledge now. I don't tell about his ability to add so that people will be impressed. I don't even know if it is impressive. But I feel, in the most unobjective way, like everything Tuck does, everything my children will ever do, is amazing.
What I do know is that there will never be enough little moments. There will never be enough times when he wants me by his side, affirming his answers and scratching his back, so I tell about it mostly as a reference, a reminder that one time he did.
"Yes buddy, I said, ten plus three is thirteen. Great adding!"
But I think he heard "press" instead of plus. He was touching each pepperoni as he added, kind of like pressing a button, and that term stuck around much longer than the greasy circles I wiped clean when he was finished eating.
More recently Tuck's been using his fingers to find sums, and scratching marks on paper for bigger numbers. We make up stories about how many fish he and Poppy catch together or how many grubs he found this week, we add cucumber slices and Angry Birds and finger puppets and Toy Story characters and we add all the Nem&Nems he eats for dessert.
Tonight at bedtime Tucker asked to do some press problems instead of reading books, so we sat at his desk with crayons and paper and added popsicles and alligators and grapes. As it got close to eight o'clock Tuck said Mama, this is awesome, but maybe I could get in bed now and you could scratch my back for a little moment.
I know there will be lots of little moments when Tuck needs to do quick math, to calculate a tip or to double a recipe or to confirm correct change, and I'm glad he's gaining number knowledge now. I don't tell about his ability to add so that people will be impressed. I don't even know if it is impressive. But I feel, in the most unobjective way, like everything Tuck does, everything my children will ever do, is amazing.
What I do know is that there will never be enough little moments. There will never be enough times when he wants me by his side, affirming his answers and scratching his back, so I tell about it mostly as a reference, a reminder that one time he did.
5.05.2013
Third Degree
We spent the day celebrating Aunt Kate. She's somewhere in the sea of graduates, above, but unfortunately that's the only shot of her we have. By the time we met up with her after the ceremony she'd stripped her gown and headed straight to the garden to dig for worms with her favorite nephews. The boys, by the way, were good little attendees, and we were glad they got to hear Gordon Gee and Barack Obama speak today.