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

wH2Oleheartedly

 Without much hesitation, Tuck gave the fountains his enthusiastic approval.

 JEB

Tangled

We can twist ourselves into knots thinking about when she might die, or we can allow ourselves to get caught up in time spent living with her...

JEB