The hardest things

I worry, already, about the day this spot will look empty.  Tucker calls it “Cewie’s couch,” but she shares it with all of us.

I ask him, repeatedly, to share.  Although I feel like a fraud to insist on it.  I read an article recently (Growing Child, July) that said not to insist on it anyway, that children aren’t ready to share until close to age three.  The research suggests encouraging turn-taking, but not talking much beyond some semblance of fairness until later; the author explains that for the purpose of developing a sense of self, possessiveness is a necessary step.
It’s hard to share.  Even before I read that particular essay, because I espouse it and continually fail at it myself, I tried to cut him some slack.  Sharing is, perhaps, the hardest thing we ask young children, at such an early point in their short lives, to do -- to care more about others' feelings and wishes than their own.
The other day Tuck let an ant crawl around on his arm. He spoke to it: Hey little guy, what you doing? Where you going? You like my arm?  At one point the ant fell off, and Tucker, in his enthusiasm to get the ant back, accidentally squished him.  He apologized: Sorry little guy.
It crossed my mind at the time that I could take advantage of the opportunity to speak to Tuck about death, beyond simply: Sorry buddy, the ant is dead. It can’t crawl on your arm anymore.  I haven't found courage enough to research what experts say about talking to toddlers about dying.

This morning when he woke up, still snuggling in bed with his beez under his chin, Tuck said: Celie will not grow up and eat pizza.

I hate that, for him, the hardest thing might not be sharing.



I believe that children with aunts who adore them are infected with a potent sense of confidence.  Nieces and nephews learn the probability of error or failure is slight, are encouraged to chart their own paths, chase their own dreams.
I also believe that an aunt's love can serve as a powerful incentive to do good.  Children whose aunts make them feel like life is a very big thing, a thing really worth living well, grow an inclination to generosity greater than the temptation of acknowledgment or power.


the Doing

We've been keeping busy with the sun, and with a little boy who will not be two years old forever.  When posts are far between it might just mean our cast is living the next story, treasuring the doing more than the getting done.


Song For You

There was a time, last fall, when we thought the next time we'd hear Justin Roberts play might be at Celia's funeral.  Today he sang for her, and she was with us to enjoy it:
I will sing this song for you
Whether you are far or near
It'll whisper in your ear
It can't be stopped from breaking through...


A Dog and his Boy

Colby follows Tuck around like a, well, like a lost puppy, practically begging him to play fetch again, to chase him through the house in Nascar circles, squealing and tackling each other to the floor, to sneak him another dog "cookie."
But sometimes when Tuck is hugging Colby, or using him as a stool, or riding on his back telling him to "gallop," Colby shoots me a look like he’s being tortured and would I mind saving him?  Please?  Like THIS INSTANT!
I haven't the heart to tell Colby there's another little guy on the way.




A few weeks ago I said something to Andy about how interesting it'd be to see what kind of outfits Celia, at age four, would be putting together.  I guessed she might be pairing plaid and polka dots, orange with pink, tights under bathing suits.  Andy used to hesitate a bit when it was his turn to bathe her, often asking whether the clothes he chose after her bath matched.  Now, though, he's confident, claiming that he likes to imagine what she might choose.
I like to listen to him talk to her as he gets her dressed, telling her he picked her blue "happiness" dress and some rainbow striped pants.  And I like to imagine that, regardless of her health or cognizance, she feels as beautiful as she is.

If you live in the area and don't have plans this Sunday, Grammy-nominated Justin Roberts will be performing a free concert at 4pm at the Maple Grove Church on the corner of High and Henderson.  It will be the fourth summer we've gone -- the first time Andy took Celia she danced and clapped... Justin has always been her favorite.  Have you seen his McDonald's "Apple Tree" commercial?



Andy's home!  He's been gone all week, fishing.  There were a few bumpy patches here without him, but mostly bright spots:
Andy was gone for nearly nine days, and we survived the week due in large part to a number of people who stepped in as surrogate parents - cousins, aunts, grandmothers, friends.  Dinner was delivered, children were taken to play or to convalesce, Gatorade and medication were distributed, schedules were rearranged. 
Andy caught lots of fish -- enough to earn the Betz's Scotia Cup again this year.  He brought back several rocks for Tucker to add to his collection.  And this morning we had pancakes made with blueberries picked from a bush in the Canadian wilderness less than 24 hours ago.  He won't go back for another 357 days or so, but I'm pretty sure the official countdown will soon be on again.


While I Watched

You know when you're in the middle of something and you step out of yourself for an instant to witness the total contentment of the moment, the simple perfection of feet on the ground, of hearts beating and smiles spreading, of merely existing? 
I caught myself doing that while I watched him "paint."


By degrees

Mid-summer, when the heat index reaches high, we wait till the sky heads toward shades of frozen blueberries to take Celia out.
We sat outside yesterday evening.  She helped entertain surprise visitors and supervised Colby's backyard bath.
It's not often that Celia and I get to spend extended time together, just the two of us.  (Well, the two of us, plus Colby.)  I treasured the time with her without her little brother around...
She is a fabulous napping companion.  She is agreeable to nearly any television show, and doesn't mind the time I spend reading magazines and novels.  She doesn't ask for many bites of ice cream from my bowl, nor does she accuse me of hogging the computer.  She leaves room at her feet for me to sit next to her, biding time in the most pleasing ways.
And even though she is dying by degrees, there is something special about spending time living the day with her.


In Park

I took Tucker to the park this morning, and I made a rookie mistake.  I told him we were going to the park.  Even with four years of mothering experience, I messed up.  Although we'd gone to enjoy the jazz concert, Tuck asked -approximately forty five times in the same number of minutes- where the playground was.
He played with his sunglasses on, and played with his sunglasses off.  He picked grass and counted blades.  And he asked where the swings were.
He laughed at tickles and clapped for the musicians and played some songs of his own.  And he wondered aloud, no fewer than ten times, whether there was a slide.
He kept an eye on baby ducks following their mama and watched the fountains spray, activities interrupted with fairly frequent queries about playground equipment.

I took Tuck to the park tonight.


Sea to Shining Sea

While Celia's legs have atrophied, his have pounded pavement from the Pacific to the Atlantic.  It's taken four months and eleven pairs of shoes, but Noah Coughlan has traversed nearly 2,500 miles, and has raised tremendous awareness for Batten Disease along the way.
There is no acceptable, arbitrary "level" of awareness.  Somewhere there is a scientist with the ability to undo the damage genes inflict on children with Batten Disease.  Everywhere there are people who may not have heard of Batten, people who, given the chance, might be inspired to join the battle against it.  Although Awareness Weekend has come and gone, Batten is something we cannot stop thinking about and talking about until there is a cure.  And Noah has spent months doing just that on behalf of families like our own.

Noah serves as dramatic proof that people are capable of accomplishing feats that begin as mere dreams, and his run provides hope that grace may someday be shed on our dream for a cure.
Follow his finish this weekend!



This week marks the halfway point of our third pregnancy.  Family planning, for us, has become a lot more than love.  It means not only creating life, but also avoiding certain death.  Blind to the alternative of being done having children, and after months of misgivings and multiple meetings with genetic specialists, there was still no comfort in the remoteness that Batten could strike again.  

Fueled by acceptance of her bleak reality and filled with apprehension for our future, we took a chance.  Our prayers were never for relief from nausea or exhaustion, but only for this small soul to be healthy.  Fortunately, what could have been a nightmare became the sliver of a dream.  We are still facing horrific loss and so it seems strange to be anticipating something so enormously wonderful, but it also feels just right to be answering death with life.
*Baby boy actually spent part of his twentieth gestational week working.  The kid needs a 1099.


Proud to Be

Aunt Sally, thank you for Celie's dress.  
Cousin Vanessa, thank you for Celie's toe polish.