3.31.2011

Sitting Tuck


3.30.2011

Improved

She can’t see, but she makes regular life look different.
Late March snow seems less like an unwelcome delay to spring and more like a gift, one more chance for her brother to stand at the window transfixed, one more opportunity to wear thick socks with boots and to marvel at each miniscule mathematical miracle as it falls.
A sink full of dirty dishes feels far from a nuisance, and nearer a sign of fortune.  Our tongues can taste and our teeth can chew and we get to sit around the table with people we love enjoying several square meals each day. 
The disappearance of her abilities is diminished, some, by her beauty, by the way her light gathers the proverbial moths to flame and gives attention to science and the someday promise of undoing the damage the disease wreaks.
She can’t see, but somehow she has improved my vision.
JEB

3.28.2011

Humane

He LOVES his sister.  Much of the time she is slung into the hammock of someone's arm, resting in the gold leather chair, her head at the height of his.  He pauses next to her, waves his hands tenderly over her curls, and then turns around and rubs the back of her head with his own.  He loves her, and he wants her to know it, even if through some sort of original hair-to-hair emotional osmosis.  This ritual, a small act, does great amounts of good for all of us.
His emotional maturity is impressive, his compassion remarkable and his sense of justice endearing.  Would it be the same without her?  Is it a result of living with her, of desiring to alleviate her pain?  Instead of playing next to her, oblivious to her presence, he piles toys around her on the couch when she's awake, literally lining balls and blocks and cars along the edge of her body.  When she's sleeping, he knows to be quiet, to climb carefully up to stroke her forehead or to position himself gently at her feet to read books.  And when she cries, he rallies everyone around; holding her hand, he asks us all to kiss her and tell her it'll be okay. 

We went to the zoo last week, and while we drove Tuck talked about all the animals we would see.  "Celie will see the elephants, too!" he said.  We explained that she couldn't see them, but that she might hear their footsteps and that he could describe them to her - what they were doing, what they were eating, what color they were.  Tuck spent the day racing from one exhibit to the next, all the while keeping a running commentary for his sister. 
"The monkeys are noisy, Celie girl.  The baby monkey is LOUD.  The monkeys gave me a apple"  (For the record, No, they didn't.  But he did eat an apple near the gibbons...) 
"Those manatees are BIG, sister.  They are big under the water.  And that sea turtle is from Aunt Vicky."  (Again, for the record, Aunt Vicky and family adopted a sea turtle in honor of Cel & Tuck as a birthday gift this month, so Yes, sort of.)
"The flamingos are sleeping, C.  They are tall and they are standing on their feet.  They are resting and they are pink!"
His compassion does not come as overflowing sentiments, but rather as small works of mercy.  Small works, from a small person who seems to have a good handle on some big things.
JEB

3.27.2011

Grape Expectations

He clutches the juicy, purple spheres and it's tempting to imagine our family's future in his small, dimpled hands.
JEB

3.24.2011

Rainbow

Dear Meg in Kansas,
Thank you for sending rainbows and warmth to Ohio.
Love,
Celia & family

3.23.2011

In the Great Green Room

There is a new bed.  Before, there was a built-in window seat, next to a closet, next to another window, across from the door.   Which really left only one wall available for a headboard.  Andy thought maybe he could turn the window seat into a bed frame.  And then he thought better and hired someone to do it.  And we couldn't be more pleased.  And neither could Tuck.  Here he is, just looking at his new bed:
Jason, the carpenter (LMF Custom Wood Work), is a friend.  And a talented woodworker.  And very patient with little helpers.
Jason was also patient with big people who had trouble making decisions, who wavered about wood varieties and who were indecisive over the number of drawers.
Jason works with wood that is harvested under responsible practices.  He also uses reclaimed lumber; Tuck's drawer fronts are made of hemlock from an old barn.  The drawers are HUGE.  Jason did not waste an inch of storage space. 
Right now, Jason is working on wooden puzzles for children.  He's also building a bookcase for Tucker and Celia's newest cousin, due in just days.  He specializes in tables and benches and lamps and countertops, but he'll obviously accept special orders.  If you'd like a quote from Jason for a project at your house, contact him here

And because I bet you'll ask, G'Ro made Tucker's quilt.  He calls it "my new big beez."

JEB

3.21.2011

Day On

Yesterday, Tuck played outside and had lunch, and I gave him a bath.  Then he ran, naked and dripping, to his room, climbed up onto his bed. And peed.
I rinsed him in the tub again, diapered him, and stripped his sheets. While I put clean linens on his mattress, in the room across the hall he found and opened a bottle of "Mommy's toe polish" and painted some of his piggies and most of our bedding a springy shade of pink.
I scrubbed him with polish remover and bathed him again.  I started the first load of laundry.  And I made a mental note not to leave nail polish out.
Although they're not typically siphoned in such catastrophic style, the job of domestic operative leaves me without a solitary spare atom of energy.  However, aside from the sheer exhaustion of the job, of tending toddlers and handling housework, the domestic dash is always punctuated by wonder.  I am stilled by the steady thought that he is ours and he is wonderful.  He is two and he is healthy and curious and mischievous and kind.  He - and his sister - keep me from sinking into that place where I forget what really matters.  He is a heap of happy mess.
Last night, Tuck crawled into clean sheets and said "This my new bed.  Fank you, Mama."
But I'm pretty sure I should have been thanking him.
JEB

3.19.2011

Imagination

His ideas grow as hurriedly as his body.
 JEB

3.17.2011

Bright Blessed Days

Yellow sun.
Green hat.
Red head.
JEB

3.15.2011

Passing Serenities

I am exquisitely aware of the passage of time.  I pause, mid-blink, and I know it deep as bones -- this night is special, they are perfect, I am blessed.  My hand does not go to my chest for the comfort of my own thumps, because -for this ordinary moment- I witness life through the clear lens of presence and appreciation.  Our bedtime snuggles and stories make us like millions of families across the globe.  While we read I forget to think about how close we might be to the end.

JEB

3.13.2011

Let us be glad in it

When Andy gets home from work, he asks Tucker what he did while Andy was gone.

In Tuck's words, this was the day:

I go outside.  I saw the dogs.  I saw the bird nest way up in the tree.   
I say hi to the man.  The man was sweeping the leaves.  
I saw the kitty cat.  I share my giraffe with the kitty cat!  I go night-night with the kitty cat. 
 I say bye to the man.  I count the acorns.  I kick the acorns!  
 I saw the airplanes in the sky.  I drink juice.  I sit at the biiig table.  

It's interesting how he throws in other things he's been thinking about during the day too:  

Aunt Sally's in the elevator.  Where is it my birthday balloons?  RoRo is on the airplane with Pa Rod.  My sing it the Superboy song.  Where is it Colby's ball?  Little bit milk in the frog cup, please?
I love the way he remembers details, describing his own happy reality.  I love that in the recall every small thing becomes big - the rare treat of a juice box, the reunion with a forgotten infant toy, the collection of letters stamped on the concrete.  I love that nearly every sentence he speaks begins with "I", a sign of age appropriate egocentrism.  I love the way he makes rejoice a daily prayer.

I love the way he wants to wear a hat now that hats aren't so much necessary.

I felt warm while we adventured, and again while I listened to him recount the day.  And I think it had less to do with the sunshine and more to do with his outlook.

JEB

3.09.2011

To and For

To Celia (four), and for Tucker (two) on 3.7.11

Dear Celia,
I sat with you in my lap on the seventh, and while silence reigned for the span of a hundred heartbeats I catalogued my impressions of you.  From the babe who was burning so brightly to the brave soul of a resilient four year old, your spirit has been -and always will be- astronomic.  I am so glad you are part of the unique constellation of people who make up our family. 
You have taught us what we didn't set out to learn, sweet Celia.  Our love has been recast in the stone of your diagnosis, your helplessness and our own; it is fierce and unequivocal, absolute in its allegiance.  Our souls have been scuffed, our hearts are bruised, but with you we are tethered less to this world and more to each other.  From you we have learned that grief can be split up, given away in tiny fragments and instead of hurting fellow mourners, some suggest it might even improve them.
If I ever wonder what made me a mother, a writer, if I tug the thread of that urgent need to love a child or to put marks on paper, it will always lead back to you.  You have given me courage to admit my vulnerabilities, and permission to label unimportant as such.  You remind me that outcomes -mistakes and successes- cannot serve as proof, or indictment, of my competency to mother.
You spend most of the day asleep now, neck bent, knees tucked, trifolded like an old-fashioned letter set to post.  We are so grateful you were delivered to us four years ago.
All My Love,
Mama

Dear Tucker,
I try to make the details of the differences between you and your sister seem less interesting, to call your commonalities to the surface instead.  Like her, you make us proud, and you make us happy.  Your sister taught us to set aside any parental entitlements, and there were times we feared grief forevermore.  You've shown us that excessive caution does not equate to guarantees, and I appreciate the way you help me repress my urge to hover, how you amplify my ability to recreate.  We no longer experience unfettered, na├»ve joy, but there is no bigger happiness than that you bring to this family, little boy.
Your intrepid nature and your ready mirth allow me to assume a certain social ease will always be yours.  At two your routines frequently feel as malleable as an iron crowbar, you are as firm in your opinions as a green banana.  Although getting your attention can feel like trying to lasso a gnat, I love that you remind me to slow down, that you are already making observations it took me years to figure out.
You don't upset easily, but when you cry -face red, lips wobbling- you abandon yourself to sadness in the way that toddlers do, the way that knows misery is bottomless and insatiable.  But your tears are only momentary, your attention shifts quickly and absolutely in that young, honest manner and instead it is your giggles and splashes and playful nature that usually frame the scenes of our days.  I've oft mentioned, and photographed, the smiles that crack your face -like a plate breaking- the kind that barely leave room for your cheeks.  You're gorgeous, Tuck, but my favorite feature is the light in your eyes, a vitality that makes you glow from inside, that lends a steady, brilliant beam of hope to our family.

Love Always,
Mama

3.08.2011

Housekeeping

1.  Noah Coughlan is running across the country, from California to Florida, to bring attention to Batten Disease.  He took time from the twenty or so miles on his agenda today to call and wish Celie a happy birthday.  Obviously our family is tremendously grateful for his efforts.
Andy attached, on the left sidebar of our blog, a widget that tracks Noah's progress.  You can also "like" 2011 Run America for Batten Disease on Facebook to follow his journey.
UPDATED 3/8 at 9am with link to video message.

2.  Saint Stephen's Shrove Tuesday Pancake Dinner is tomorrow, March 8th, from 6-8PM.   Join us if you're able!

3.  Thank you for supporting BDSRA by ordering Thirty One Gifts.  Based on sales and parties booked, Heather reports a total close to $250 will be given for infantile Batten Disease research.

I'm working on birthday letters to both kids.   Till those are publishable, party pictures:
JEB

3.06.2011

"I go to Brutus' house."

"I go to the BIG two."

-- Tuck, age two

3.03.2011

Hiding, but not Invisible

March straddles two seasons, a shimmery quicksilver month.  Much of the country is ready for the emergence of spring but wary of the calendar’s confusion.   Flowers crouch in buds on branches, hiding but not invisible.

++++
In an instant I am twenty nine again, just turned, and she’s an infant, freshly born.  She is a warm roll in my hands, gleaming in all her beautifulness, a face that could make the sun shine.  Four years ago, when nothing had gone wrong and nothing ever would.
++++

Nature sets an example for those of us who have a tough time with transition.  This time of year the amplification of new life allows for a way of thinking that encourages hope, and the rain that frames the next day shapes a darker mood.  It's natural.

++++
My eyes fasten on her, compass needles and she's North.  I can see the girl she should have been, hiding but not invisible.  Her face allows for a way of thinking that maybe the show will not end, that perhaps we can overstep the cruelty of this, that it is possible to plan for the luxury of time.
++++

I know.  Our loss is some gain.  We are unfortunately fortunate.
But we can't make sense of something that doesn't.
JEB

PS.  Do you view our blog in a reader?  Should we draw your attention to the new header?  Click through to see it.  So dear to us, those two.

3.01.2011

A Pleasure

Last night we attended Spagio's Celebration of Wine, Food and Dining with the Stars presented by the Pleasure Guild of Nationwide Children's Hospital.  The event benefits the Pediatric Hospice and Palliative Care Program at NCH; Celia has been under their care for two years.
Caring for patients, especially young ones, with end-stage disease requires extreme sensitivity and extraordinary knowledge.  Cel’s hospice providers have delivered expert care, promoting our entire family’s quality of life.  (This is not our entire family, but we were thrilled to have a big group with us this year.)
Last night's menu included things like foie gras and shiitake pot-stickers, prosciutto wrapped shrimp, watercress soup with escargot, lemongrass poached lobster, ox tail burgers and hand-painted chocolates.  Our table's favorite wine (and we tried them all!) was a 2009 Orin Swift red blend called The Prisoner California.
We are grateful to the dedicated women of the Pleasure Guild, to the folks who bought tickets and who support families whose lives have been disturbed by loss, to the wine purveyors and to the sixteen world-renowned guest chefs who donated their time and talent.  And to Chef Hubert, a gentleman who comes across as the kind of person who’s more concerned with building relationships than reputation. (Although I'm fairly certain his reputation is top-notch.)
The event is spirited.  It's not a place where hope is thrown around like confetti, but donations flow almost as freely as drinks.  Hospice is not the kind of charity that can turn money into magic pixie dust, providers cannot offer patients treatments or cures, cannot prescribe parents a strong calm.  But Celie's nurses share a different kind of special power, the kind of compassion that makes tragedy a little easier to swallow and that soothes heartache for families like our own. And like others we met last night.
 JEB
* read about last year's dinner here