P*l*ay Dirt

I can't believe I'm saying it, but what a treat it is to watch him discover the pleasures of dirty work.



During her initial decline and in the immediate wake of her diagnosis, it was hard to find good.  And even still on days when it feels like we're tiptoeing along a blurry edge between life and death, it's easy to find ourselves lost in the land of the impossible.  Those are the days I can't do anything without feeling the prickling hot behind my eyes.
But there are times when the clouds part and the glory of heaven escapes and lands here.  Times like when I swaddle my daughter after a bath, a mercy of mundane living.  Of living.  I feel a heightened sense of gratitude in the simple routine, in the drying and the detangling and the dressing, each part of a fresh joy.
Times when, even if it seems like a rare phenomenon, I know we most certainly haven't been passed over by an absent grace.  When I realize that she is here at all makes me one of the luckiest mothers who have ever drawn breath.



We’ve held hands before, when he’s needed help managing a big step, or when we’ve traversed a parking lot, but he’s not usually the one to initiate holding.  A few days ago, as Andy pushed him in the stroller, Tuck offered his chubby, tanned fist to me and asked, “Hand?”  He held his arm out, finger tips extended as though they were antennae through which love entered and exited his body, and he slipped his hand into mine, squeezing tight.  I hope the emotional pull of that small gesture is never diminished.



Grow Up

In the limp summer haze, he was a baby. When the golden rays tinged his complexion a dark hue, he seemed small.  Was it a trick of sunlight, or a trick of time?
This morning he went to school* a bright, polished boy, shining with cheer before even the sun was up.  Bouncing excitedly on his toes, his pink cheeks puffed into a grin so wide it looked to span the entire classroom.
The enrollment form asked what makes him unique, what makes him special.  I found it hard to stake the entirety of his persona on one thing.  In an instant he leaves me both exasperated and impressed.  His ingenuity, his enthusiasm, his perseverance, his energy, his tenderness, what isn't special?  Superlatives don't feel nearly super enough.
Many children are curious, but it flames in him, in his eyes, in the restless way they're often looking at the one place he cannot see.  Toddlers are at once sponges and parrots, but he is shockingly articulate, endearingly bright.  Maybe every parent's offspring does the same, but he steers my thoughts in the direction I need them to go.  The world is his oyster, and he makes it impossible not to be grabbed by the promise of another day. 

To his teachers, I say He is special, he is unique. You will see.
To him, I plead Grow up, small boy, grow up.  You will never outgrow my heart.

*school is used loosely, meaning Tuck is giving a once-a-week-for-two-hours Parent's Day Out program a shot 
And also, BSG, thank you for helping me think.



The subject of my sorrow, she delivers a simultaneously hefty portion of my joy, a beautiful excuse not to cry.


Tea Time



Summer House

In the summer, when the sun is shining, we blow through our home like the wind of another season.  Things are prioritized differently on blazing days and, even when we're summering through the confines of a terminal disease and a napping toddler, our days are full.  And so our house is a mess.
We pass through for meals, sometimes, moving the pancake plates out of the way for dinner.  We breeze by to change clothes, to repack purses and bags, to grab towels and suits or to throw on a skirt.  Our days fill with walks to the farmers market and bridal showers, ice cream with friends and splashes at the park, watching bears at the zoo and looking for bugs in the backyard.  We visit the house just long enough for a flurry of things to happen, but not long enough for any of it to be recovered.  We spend time at home when the moon hushes our happenings to sleep, often resting in sheets that have long ago been laundered.  On gloomy days we tend to want to remember what it feels like to sit on our couch rather than tidy late night sewing projects or sort piles of mail.  Wasting time in a way that's too enjoyable to consider wasted, we neglect some things so that others can be savored.
The air is crisp and requiring our attention are taco truck tours and tailgating parties, weekend weddings and tiny tot tumbling, apple orchards and pumpkin patches.  Sidewalk chalk on the path and shopping bags on the dining table can wait, because right now there's only extra time for things like laughter in the bathtub and hugs in the hammock.  At this point, I'm afraid the house isn't going to be picked up before it falls





Occasionally I’m struck by things I haven’t thought of before, surprised they hadn’t yet occurred to me.  Tucker can do this, and she couldn’t.  Tucker will do that, and she won’t.  Most often the sad realizations arrive slowly, a sort of cerebral parsimony.  My mind’s way of parceling out the heartache helps though, because surely if it all came at once I couldn’t handle it.


Of Our Eyes

He asks for "apples" now, several times a day.  He steals into the kitchen, our honey-haired boy, sneaking apples from the counter.  And even though he only takes a few bites, we let him have another.  It's no problem to finish the apples he starts.  And it's a treat to watch him daydream while he snacks...


Good Enough

Good mothers use soft tones with their children, they say yes when it’s hard and no when it’s not easy.
Good mothers pour homemade popsicles and perform finger plays, brush tiny teeth and fold little laundry. 
Good mothers model manners instead of biting their tongues and counting to ten and still letting it slip.
Good mothers gaze at slumbering children instead of rushing away for a moment to themselves.
Today I was good enough.


I turned off the comments for this post.  As much as I want our blog to be a place to record blessings, we do have bad days and I don't want to pretend otherwise (but I also don't want to beg sympathy).  My mother sometimes reminds me that she occasionally felt the same way.  And yet I worshipped her.   So really, I know that good enough is good enough.


Our House

Where happy lives.



Dear Tucker,
You are eighteen months old today.  You're not our oldest child, so it’s not really your birthright to push us regularly into new vistas, yet that's what you've been doing.  With you we haven’t wasted time reading developmental books or looking at milestone charts.  We did that last time, and the information gave us false hope.  Under a deliberately cultivated protective layer of obliviousness everything you do is amazing. And brilliant. And so advanced.  And although it may be kind of annoying for others, we feel like we've earned the right to boast a little at this point.  Technically, we'd like to consider what we do kvelling, the Yiddish word for the way parents burst with pride over their children.  You are the source of our family's joy, Tuck, and frankly it's difficult for us not to tell the world how wonderful you are.  And we try to tell you, too.  You are wonderful, Tucker.  You are.
In honor of your eighteen months, a list of eighteen things we love about you:

1.  The way you choose a book and, with it in hand, back up until your bottom finds a lap.
2.  The way you say your sister's name, and all the ways you show her love.
3.  The way your starfish fingers move from crayon to train to grape to around our fingers.
4.  The way you push your little wooden chair next to the couch, climb up, count to three and then jump.
5.  The way you help put your hands through sleeves, and how you look like such a big boy in jeans and a button down.
6.  The way you ask for melon and 'sicles, a diaper change and a bath.
7.  The way your hair curls into a single soft ringlet at the nape of your neck.
8.  The way you share food with Colby, dropping it from your tray and following it with "Uh-oh. For dog."
9.  The way you, despite an impressive verbal explosion, will only call your blanket "beez."
10.  The way you run with abandon, away from our zooey zip tickles and toward our eyes, nose, mouth kisses.
11. The way your eyes captivate us, as if chocolate was boiled down and rendered into your small gaze, and the way they sometimes smile bigger than your lips.
12.  The way you work at things, confident you can put the lid back on the highlighter or spoon out the last of the yogurt from the container.
13.  The way you break into motion any time you hear a tune, twirling on tiptoe and bending your knees.
14.  The way you sit tall on the piano bench and sing along with the "low" notes, your favorites.
15.  The way you search for pictures of Celia to carry around and smooch.
16.  The way you point at and name all of the items around your room when we kneel next to your crib after you've napped, and then the way, as you wake, you always ask "Mama? Dada? Cobee? Cewee?"
17.  The way you repeat words from adult conversations, and invariably fixate on the ones we should have whispered.
18.  The way you give us stories to tell and smiles to spread.

You show us life through a new window, Tuck, and when we look from your vantage more light pours in.  Your birth altered our whole posture on the planet, and you instantly loaned us some of the shine in your little body.  We thank you for that, baby boy.
You are wonderful.  And we love you. 
Mama and Daddy


How Firm thy Friendship


Vote 4 Hope

More than 350 years ago in London, Dr. William Harvey, a man whose life was distinguished by the discovery of the circulatory system, wrote:
Nature is nowhere accustomed more openly to display her secret mysteries than in cases where she shows traces of her workings apart from the beaten path; nor is there any better way to advance the proper practice of medicine than to give our minds to the discovery of the usual law of nature by the careful investigation of cases of rarer forms of disease. For it has been found in almost all things, that what they contain of useful or of applicable nature, is hardly perceived unless we are deprived of them, or they become deranged in some way.  
Harvey's words, from 1657, appear in the paper The Key to the Closet is the Key to the Kingdom: A Common Lesson of Rare Diseases by Frederick S. Kaplan, M.D. July 2006

The Children’s Rare Disease Network has entered the Pepsi Refresh Project for a chance to win $250,000, money that could support the continued development of the Global Genes Project.  The project aims to generate increased awareness for the rare disease community and to encourage pharmaceutical and biotech companies to get more involved in creating therapies for rare diseases.  If the Pepsi Refresh grant is awarded to the CRDN, initial pursuits will be geared toward rare disorders.  But, breakthroughs could have profound consequences for understanding more common diseases as well.  Someday scientific advances resulting from rare disease studies might be able to help you or someone you love.  Right now your help provides hope for millions of children.  Please vote.
Although it looks like something we could stage on our own kitchen counter, this image is from the Hempel Family.  Twins Addi and Cassi use supplements, medications, pill crushers and syringes in their battle against Neimann Pick Type C, one of 7,000 rare disorders that affect at least 15 million children in the US.

Thank you.
Jenni & Andy