O"fish"ally

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.
JEB

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."

JEB

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.
JEB

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.

 JEB

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!
JEB

Bump

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.
JEB

*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.