Be Here

Don’t rush.  Don’t move on.  Don't think about needing to wipe his sticky fingers.  Don't look away.  Don't worry about pulling weeds, or watering wilting flowers.  Don’t get up.  Don't anticipate bedtime.  Don't start cleaning up the explosion of balls and trucks and buckets.  Don't hurry the day.  Don’t forget.
Just be here, right now, and let this, this pleasure of being a parent, sink into my soul the way the apple juice popsicle drips right down his tummy.

Right here, I remind myself, standing perfectly still, neither looking backward or forward, but still with the simple belief that we will not always remember the last five minutes, that we will get through the next five minutes, and that right now is it.

 JEB

Years Ago

He put love in my heart.
And then he put a ring on my finger.

 JEB

Sieve

She liberates me from stress over minutia, helps me filter out what's really important.  Outside the perimeter of normal, away from frenetic schedules and competitive agendas, she has encouraged me to create bigger margins for happy to happen.  She's taught me to sort wheat from chaff, to sift tedious and irrelevant from necessary and true.  Her smile reminds me to grab on to the joy and let the rest just slide right through my fingers. 

JEB

Prune

Summer is for all-afternoon parties in the pool.

JEB

Plum

Plum lucky,
Plum loved.

 JEB

Kisses

With them, frogs turn into princes, sleeping spells are broken, wedding vows are sealed, and parents say goodnight...

JEB

Curriculum

I see him learning, turning each new subject matter into something that deserves careful examination.
Everywhere we go becomes his classroom, his internal syllabus determining such formative experiences.
I watch him study the world around us and I feel like I've been skipping school for years.
JEB

Father Nurture

Andy takes good care of our family.  Most of the time he surrenders his own needs so effortlessly I bet he wouldn't even consider it a sacrifice.  But it is.  He foregoes golf and instead serves as caddie to his own little people, attendant to plush balls, pill bottles, story books and wooden blocks.  He fishes infrequently, sparing the rod he opts to spend time cuddling kids in the hammock and looking at "panes" in the sky and talking about the shapes the clouds take; from our very own backyard he casts love far beyond its intended spot.  He puts his preferred dinner menu on the back burner and, in place of his true gourmand, plays a short order cook who's willing to whip up whatever the rest of us want.

 CEB, Father's Day 2008 -- and TEB, Father's Day 2010

I marvel at this man, at his ability to be the father who his children need, and the partner who I don't deserve.  At the way he forgives my impatience and irritability, recognizing that I’m usually just yearning for Celia, or sleep, when I'm cross with him.  I marvel at how our hands fit together, like a jigsaw puzzle, pieces perfectly cut for each other.  At the way, when he steps into the room, my heart still rises to meet him.  He softens the edges around hard times, makes good moments even better, and sustains our family in so many ways.
JEB

Juneberry

One berry  

 two berry

pick me a Juneberry...

Tuck will not eat strawberries.  Tuck will not eat grapes.  He will not eat cherries.  He will not eat blueberries.  But he will stand outside all.day.long under our Juneberry tree, his pointer finger extended upward, saying "up" or "berry" or "please."  And he will eat berry after berry after berry.  In fact, at this point there are no more berries within our reach.

JEB

Background

At the park, where she rested in the stroller with her feet propped on the lap bar, I could see from far across the lawn her bright pink socks peeking out.  As I wrangled her brother a bit closer to her shady spot, I spied a fiery tendril creeping between the fabric in the back and, with the help of the wind, giving a flamboyant wave.
She can't play with us at the park, but she's there with us. 
She'll always be where we are, even when she's not.
JEB

And Tomorrow, Too

In the beginning I read one of our favorite books to her, and I used to think that's so true.

      I love you through and through.

      I love your top side. I love your bottom side.
      I love your inside and outside...

  

And then I read the pages to her and cried.  It was too true.

      I love you running and walking,
      silent and talking...

This evening I read to her and her little brother.

      I love you through and through.
      Yesterday, today and tomorrow, too.

And again I thought, so true.
JEB

Freeze Frame

What parent doesn't want to fix time, at one point or another, to keep their child just the way he is?  There are so many things I want to remember about both of my children, still images and moving pictures with their accompanying soundtracks, that I want to freeze forever.

The way he stops what he's doing and climbs on top of her to give her a kiss, and the "mwah" sound he makes as he does it.  The way her face lights up when she feels his lips on her forehead.

The way she spreads beauty like stars distribute light, a spectral semblance of heaven on earth.  The way that, while she grows small instead of big, she gives herself away like flowers diffuse scent.  The way, when I look into her inkwell eyes, it’s like the whole world is looking back at me. The way her hand, so little, touches so deep.

The way her smile erupts at the sound of his voice, and the way he searches for her when she's not here.

The way he says "pubs" (please) for crackers and music and outside, pointed yet polite.  The way he tugs my hair loose from a ponytail in order to twirl strands between his fingers or wring pieces through his teeth.  The way he pats my shoulder when I kneel, and how it feels as he he holds on there for balance when he slides his feet into shoes.  The way daredevilry shines through his dancing eyes.

These things may not be around long enough to beat a well worn path through my mind, and I worry they'll soon blow away like dandelion seeds, out of my grasp and into oblivion.  So I hang them here, a place I can come back to, sort of, and remember. 

JEB

Like a Tuck

takes to water. 

I know, I know.  The last four posts about Tucker have shown him splashing in fountains and puddles and buckets.  But he loves it.  LOVES it with capital letters.  So we love it. 

And isn't there something about summer, about water and sunshine and play, that feels like it must've been invented so we wouldn't go mad thinking about certain things?
JEB

How Now

How are you?  How is she?  The oft practiced rhetoric of asking, whether habit or sincere interest, usually requires a response.  The short answers live in our repertoire:  Today she is fine.  We're all doing alright this afternoon.  Last night was okay.  Most of the time it's the truth, most days we are some shade brighter than hangin' in there.  And she is, too.
And although we appreciate being asked, really we do, the long answers aren't as easy.  When your child has a dire medical condition it’s tough to know how you’re faring.  The video, though, seems to have shed more light on how she is and how we are than our responses to the common query can. 

We usually preface our replies anyway.  Today she is good.  Right now we are okay.  Life can change like the direction of the wind.  But unlike the weather forecast, there is no radar system that can predict what the next day will bring.  So instead of looking at the horizon and wondering what tomorrow will hold, we hold her and focus on the flow of her breath, reveling in the stillness behind each exhale and just feeling thankful for this time.
JEB

Lost in the Foam-ent

JEB

Video

In an effort to bring awareness to Batten Disease
and to encourage support of research that may lead to treatment and, eventually, a cure
and to acknowledge the incredible Nationwide Children's Hospital Hospice team
we invite you to watch Celia's Children's Miracle Network Telethon video (third from the top).

Jenni & Andy

Lovely Weather for Tucks

It's been raining, and I feel brushed with too many dull strokes.
Some combination of fatigue and barometric pressure blend to brew this particular shade of gloom, leaving the afternoon sky, and my mood, gray. I have to be honest, I’m much fonder of the color in the fall, when it’s on a cute tight end in the Shoe.
It’s drizzling now. I can hear it through the windows, and I can feel it on my face. It’s warm though, and it’s not rain.  My cheeks are going to need swimming lessons.
But I wonder whether tears can improve vision.  Because sometimes what I see through wet eyes takes on a bit more beauty than what I saw before.

JEB

Telethon

As we've mentioned, June 5th and 6th are national Batten Disease Awareness days.  Our family filmed a video for the Children's Miracle Network Telethon, also June 5th and 6th, to promote both the positive experience we've had with Nationwide Children's Hospital Hospice and Palliative Care, and to, hopefully, bring awareness of Batten Disease to telethon viewers who may have otherwise never heard of it.

It's hard to think of words like pediatric in combination with words like terminal.  It was difficult to sign the papers, more than a year ago, that would enroll Celia in Hospice.  More recently, it was tough for us to make the telethon video.  It is undoubtedly challenging for Hospice providers to do their jobs, dealing with the realities of life-limiting childhood illness on a daily basis.  None of this is easy, for anyone involved, but the miracle Hospice has shared with our family has been peace in the midst of pain.

We also find it hard to encourage people to watch us snivel through four minutes of film, but Celia is the star, and we know you'd like to see her shine...  If you're able, you can watch the Telethon on WBNS 10TV, with local segments airing live on Saturday evening from 8pm to 11pm (we've been told Celia's feature will likely run during the 10pm hour...) and from 9am to 1:30pm on Sunday.
We'll try to make the video available after the telethon airs, for folks who are unable to watch it live.
JEB

If you're interested, you can make a gift to NCH online or by calling (614) 460.3800.
To read more about NCH's affiliation with the CMN Telethon, visit this recent press release.  

Growing Able

Our house holds the stigmata of disability.  There is a bathing chair in the shower and there are positioning pillows in the bedroom, adaptations made to the highchair and improvisations with the stroller.  In the kitchen there's an avalanche of potions and lotions and syringes, nutritional supplements line our pantry shelves and on our counters prescription bottles rattle around like maracas.  There was a time, when Celia was still receiving in-home therapies, that I felt like adaptive equipment propagated here like jungle plants.

But so does love.  It's grown and grown and grown.  Like kudzu, love for Celia - and for each other - creeps in and fills the empty spaces and overtakes the full ones.  And the things that mark her as different, the presumed deficiencies, are the things that have given us new abilities and have cultivated in us the most love.  We've grown accustomed to making daily accommodations for her limitations, but we've grown more in our ability to see, as paramount, not the things that make our family different, but the things that make our family our family.
JEB

Right Now

For us, right now, Batten Disease is life.
For too many families Batten Disease has already meant death.

Right now, we can't be sucked into the siren-song of finding a cure.  Right now we're standing firm in the necessary work of just being with Celia.  We don’t want to look back and wish we had done less, had spent more time with her.  Neither do we want, when we see her again, to have to apologize for not trying everything.  Right now we're just doing the best we can to live with a disease that steals time and squanders possibility.

June 5th and 6th are National Batten Disease Awareness days.  We don't have big plans for raising awareness this weekend, but we'd appreciate your help.  Do you have time, right now, to spread the word about Batten Disease to at least one person you know?
Please tell them about Celia.  And ask them to Search on.



JEB