Squeeze the Day

There’s a part of me that looks forward to a time when he doesn’t leave plastic farm animals strewn about, food under his chair, fingerprints on the door. But there’s a greater part of me that knows that someday I’ll miss those things, the evidence of his youth. That's the part of me that enjoyed watching orange juice drip from the countertop today.
And the part of me that wanted these pictures for the album, the part of me that knows they’ll never be as good as the real thing.



Although I've had good intentions for how Tucker might use the water table -- as a place to help me scrub fresh fruits and vegetables and to sift rocks, to shampoo the baby doll's hair and to talk about temperature -- he's really only interested in following his own docket.  He likes to drink the water from big spoons, nonpotable as it may be, and he likes to dump it from buckets, necessitating a refill from the hose.  
I notice water dripping from his fingers and saturating his shorts, I watch as he sloshes and splashes and spills, and I'm glad to table my own notions of an agenda.


On Seeing, and Believing

We took Celia to campus yesterday.  She couldn't see her own sunset curls reflected in Mirror Lake, but she could hear the chiming of the bells.  She didn't watch as her brother raced across the Oval, but she could feel the bumpy bricks as the stroller tried to keep up.  She couldn't take in the grandeur of the new student Union, but we described to her, in detail, the way the tile is inlaid with block Os, the way the bronze Brutus has one finger in the air, a winning smile across his face.  She couldn't see, and as much as there was to look at, we couldn't take our eyes off of her.


We named her Celia.  An alluring trio of syllables.

It's a family name, one with variations we fancied.  Celie Goose, among them.  And she was, not even for a year though, a silly little girl -- long enough for the nicknames to roll right off our tongues, but not nearly long enough.
We learned, once we searched its origins, that her name means "blind."  Oh, how sad would that be, to have a daughter who was blind, we'd said.  If only we could talk to those people now, the ones who hadn't yet grown parent hearts, who thought they knew what sad would be.
We decided to ignore the worrisome meaning behind the name, to give her the name that we loved, the one that ancestors carried before her.
She won't be named valedictorian, or captain of the debate team.  She'll never be pronounced Mrs., or called mama.  But she's been called some lovely things.  

We named her Celia.
Less often, some sources indicate that Celia means "heaven."  I believe it does.


Back to School

I realize he’s merely experimenting when he throws the empty pop tart box, the one he's carefully extricated from the recycling bin, into his pint-sized pool.  And when he throws in his half-eaten peach. And some mulch.  It floats, or it sinks, and I see the science.  It's evident in the way he sorts nature too, hickory nuts in his pocket, sticks in the brown box, rocks thrown over the fence.  There’s art in the form of “circles” pointed out on this paper and on that sign and on the other child’s shirt.  Math stands behind his "more," and is part of his stacking and nesting and building, it's clear in the way he yells “nine, ten!”  Music shines through his body as it moves and is in his “round and round” bus wheels.  Literacy abounds, letters on license plates and cereal boxes, in the way he repeats sounds and claims new words quickly.  There’s gym class every night in the crib, the springs creaking under his bedtime bouncing, and there’s exercise all day long, jumping down steps and climbing up chairs.  Every morning dawns Columbus Day at our house, so much to explore!  We find Social Studies scouting our neighborhood, visiting the library and the park and the bank, and it’s inherent in the way he's developing the ability to share. 
I won’t be reviewing Harry Wong this fall, or labeling textbooks and desks.  My classroom is broader now than it used to be, the student-teacher ratio smaller, but the discoveries still find me.


It's Not Easy Being

This concrete frog has been in the Gills family for five generations.  The earliest notes on the bottom indicate its existence in 1922.
Much like Poppy John remembers carrying it around as a child at his Grandma Nell's house, where it served as a kitchen door stop, Tuck carried it around at Poppy's.  After several minutes of ribbiting, he carefully nestled the heavy amphibian next to his sister and said to himself, "nice."  He hears that praise often, as he's so good to her.  They are both very easy to love.



Our trip to West Virginia to visit Poppy John and Grandma Sandy was wonderful.
We spent much of the time outside -right through the evening hours- visiting around the campfire, dark sky filled with twinkling stars, fingers sticky with roasted marshmallow.  
During the day, Tucker and Colby ran and ran, wild dog and carefree child, chasing cats and crickets.
Celia snuggled on Grammy's lap, cheeks rosy, joining in the conversations with pretty smiles and quiet songs.
We looked through old family photos and the boys fished for bass.  We enjoyed Andy's smoked ribs, and Tucker rode the "cycle" and looked for cows.
And because spending time with Poppy is always an adventure, perhaps he'll chime in and explain why, shortly after this photo was snapped, U.S. Customs and Border Protection officials showed up.  We did end up getting away...



This post comes as an update, because we haven't shared one in awhile.  Not that there are many changes to report.  Though some who've seen her recently have commented that Celia seems to be "better" than she was a few months ago.  It's true, beneath her eyes the dark crescents of fatigue and dehydration are mostly gone, and giggles have found their way back to her lips!  She hasn't cried, hard-and-long-like-she-used-to, in months.  As much as "better" is relative, we'll take it. 

Celia is skinny.  Lean became slender and slender grew gaunt and although she lost a fair amount of weight over the course of several months, she's gained a bit back in recent weeks. She eats, on average, about a cup and a half of food a day - things like Grandpa Tim's maple syrup porridge and G'Ro's peach yogurt smoothies and smashed taters a la Aunt Sally.  There's really only one consistency she's able to swallow fairly safely now - cottage cheese and oatmeal are too thick, for example, and even thickened liquids are too thin.  She doesn't take anything by cup or bottle anymore.  Nearly every time we feed her she coughs and sputters some.  She takes several medications orally three times a day, and we try to combine those with meals.  Because she seems to be quite comfortable lately we haven't needed to give her regular doses of strong pain medication.  Her comfort, even in the car or in the stroller now, allows our family to be out and about more often, enjoying things like Music on the Lawn at our local library or short trips to the zoo or splash park.
Celia sleeps well these days.  She doesn't always sleep at night, but most of us who take turns sleeping with her are able to rest next to her because even when she's awake at night, she's content.  She spends most of the day resting, and occasionally naps.  She has no muscle control and lacks any voluntary movement, so we reposition her often.  Although her seizures seem to be under control, she often tremors and shakes and jerks.  Her body struggles to maintain temperature.  She doesn't appear to sweat, so has become overheated outside on especially warm days.  Inside, her extremities are usually cool and blue, but when Tuck isn't stealing them she has plenty of warm, handmade blankets to wrap up in.  She enjoys holding hands and being snuggled and hearing soft voices, and she frequently offers the biggest, best smiles.  Like these:


Worth Noticing

The stickers, adorning his shirt and my magazine and the dog's chin, and the way they brightly announce a new fascination.
The chatter on our walk, "oh, tree" and "oh, bike" and "oh, bug" and the careful way he put his cup in the stroller's circled slot. 
The feel of bare feet on hot cement, and the scent of sunscreen mingled with the aroma of chlorine as we snacked together in the shade. 
The striped towels left to dry over the back fence upon our return, keeping several rose blooms company and serving as a reminder that we did our best to suck the marrow right out of the day. 
The delightful sense that, these days, supper on the table means summer on a plate.
The flavor of brown butter almond brittle, a cow-to-cone treat enjoyed while the sun set and enhanced by sharing one spoon.
The way the rock, at the bottom of the washing machine tonight, signifies his discovery of pockets and how they can be utilized. 
The fact that his big sister has helped me realize that all of these things, and more, are worth noticing.


for Walking

He's a pistol, Tuck is. His energetic spirit holsters an endearing little bundle of contradictions -- he's curious and cautious, tranquil and tyrannical. Watching him swagger around in these secondhand cowboy boots, purchased for a theme party we attended earlier in the week, he seems more boy than baby.  He's all arms and legs now, his body stretching out like rawhide.  And I just want to rope him in and hold on.


PS I know!  It looks like he's jabbing his eye out with the plastic horseshoe.  He thought it was "glasses."  He puts my headbands over his eyes too...


One Hand

On one hand, her disease leaves me disinclined to delve into the depths of anyone else's dreadful experience.  On the other hand, she gives me new sensitivity to what others are enduring, she makes me want to know everyone’s story, the worst parts and the saddest details.
Often I feel like I'm carrying around stones so heavy I wonder whether I'll ever be able to cast them away.  Stories from others who have felt the depths of humanity reduce sorrow's weight ever so slightly.  Empathy feels somehow less heavy, makes my heart feel huge and open.  The exchange of anguish and despair and loss is rewarded with the gifts of perspective and strength and love. 

Watching my child die is not the method I would have chosen to verify this supposition. But when I converse with others about their heartache, their tales become a reminder of a wider life, a life I may not have paid enough attention to before.  So I listen with all of my might, I listen with sympathy and I listen with gratitude.  And although my hands feel full with my own problems, my fingers want to grab on to theirs.




He blows fresh wind into the sagging sails of our days.  And he blows bubbles.


Gonna Be A Bright

Not even yet seven am, and he's already illuminating the day with goodness.



Mama Bear

I am ferociously attached to my little cubs.
The mother in me -- the one in charge of manners and menus, the giver of baths and the keeper of clean socks -- rarely gets to hibernate. 
I knew, before they arrived, that raising them would raise questions, but I didn't bargain for the wild territory of the ones we've faced.
My instinct, with a bone-crushing fierceness, is to protect her.  To promise him tomorrow.  And I can't.
But I am grateful for our time together in the den today...

Post Edit: Oh dear.  Jenni has no idea that this could be misconstrued to be at all connected to polebrity Sarah Palin's recent "Mama Grizzlies"comments. While my wife is a fierce protector of our cubs, she doesn't spend any of her precious free time watching fair and balanced Fox News. 


TB Test

It's multiple choice.  And there are no wrong answers.


Time Machine

(Reader warning - Andy's blog posts are not clever and may be poorly written)

If you had a time machine would you go forward or back?
When you work in health care, patient interactions may become scripted.  One of the last things I say to my patients when I am wrapping up an exam is always "Is there anything I can do for you to make you more comfortable?"  If I've done my job they don't ask for more pain medicine so they always ask for one of two things. A: a million dollars, or B:  that I undo the traumatic incident that landed them in my care.  It's like we are reading from the same bad script!  Laughter is good medicine though, so I go to my snappy one-liner: "I'll let you try out my time machine as soon as it is finished."  Ha, ha, ha.  Believe me, after 6 years I gag a little every time I say it... but it still works.
I've been guilty of saying to Jenni that I wish I had a time machine.  Once, after I mumbled about it, she asked me if would I go forward or backward.  Picture me with a blank stare and my mouth slightly agape.  I had never thought that far myself.  Here is what I decided:
When I really think about it I would never want to undo Celia.  She has changed me.  Not all in a good way, but changed me deeply nonetheless, and mostly for the better.  Some days I don't like who I am. And a lot of that has to do with the cards we have been dealt.  Go back in time and don't have Celia, problem solved, right?  But I look forward to the man I will become.  I would choose to go forward, and probably not even very far.  I can't hurt any more than I have, than I do.  I can't miss her any more.  The Celia she was is already gone.  Besides, to go back in time now would take away the greatest thing I have ever been a part of, this family of four.
Celia gives our yesterdays memories and Tucker gives our tomorrows dreams.

Post edit:  Andy doesn't give himself enough credit.  I'm glad my future is with him.  JEB



She has maneuvered her way into a multitude of hearts.
It's taken me awhile, the idea forming in the manner of a pearl, to recognize the extent of her sharedness.  As cards and letters arrive at our address, as far away church bulletins that list her name accumulate, as her hands are held and as whispers fall into her ears and as laps don't want to give her up, the idea has been grinding slowly into my mind.  There have been so many people who have, in so many ways, helped smooth over some of the irritation.  People not just guiltily fascinated by the magnitude of her suffering, but who steal some of it away, leaving luster in its wake. 
We've alluded to the idea before -- we understand that she is not ours.  But this realization is different, this idea that she belongs, in some way, to so many people who seem to love her deeply.  We feel very fortunate to share Celia with all of the people who have ended up caring about her, our baby, a gem.  So are each of you who love her, too.