What is it?

When people ask about her disease, there are so many things I want to say.  It’s shit.  It’s interminable medications and sleepless nights.  It’s watching your child die, the possibility of death every day.  It's a parent heart that pounds like a dryer full of wet tennis shoes.  It’s a long list of nevers.  It's terror and desperation and anger, days spent weeping from an internal faucet.  It's not like other families, who hope to keep their kids out of kitchen cabinets, out of trouble, out of whatever, it's just wishing you could keep yours out of the ground.  It's ridiculous amounts of suck.
It is also kind people and sweet words, bags full of food and mouths full of condolences.  It's knowing we are loved, and seeing it in action.  It's rich, unexpected delights, gifts of strength, perspective and hope along the way.  It's the ability to blow off the dust and clear the clutter, to know this life is a lovely one, it's a constant reminder to resist complaints about the tediousness of minor annoyances.  It's an ever-growing chorus of prayers.  It's the slow, steady promise of science.
We spent the day with other families who are affected by Batten Disease, an afternoon in the presence of so many who know precisely what it is.  
Today it was simply a good excuse to dress up and smile.


Christy said...

She looks beautiful, as always. Hope your time with others that "know" was good. It's funny you mentioned keeping little ones out of cabinets and drawers, because that is what I do with Cora all. day. long! Thanks for the reminder to be glad to have that problem! :)

zarniegall said...

What a wonderful picture!! It is so hard to remember what Celia, and you all, are going through when you see that beautiful girl smile!! She lights up the room! Thank you for reminding me to never sweat the small stuff : )

ANewKindOfPerfect said...

I am glad you had a fun time with other families that get it. It is so important. Celia looks gorgeous in that picture!

And you are absolutely right, it is the suckiest of shit.

Poppy John said...

My prayer is that not to far in the future, the world will be blessed with a cure...and a child will display a similar
beautiful smile...caused by a "zooy-zooy-zip". When I get depressed, that's the only thing that makes this less sucky.

Anonymous said...

Very sucky indeed. But that picture? So beautiful.

Debi said...

Beautiful picture of a precious girl. The Batten that has attacked her, so hard, so unimaginable. so not right. There are so many on the journey with you, to laugh and cry with you, to support and encourage and pray for you and battle to irradicate Batten.
Love and hugs and prayers,

Tara said...

Jenny B. is my friend and neighbor and she shared your story with me many months ago. I am inspired by your words and admire your courage. You have a beautiful daughter, a handsome son and an amazing spirit. As a mother of 3, I can only imagine your pain and frustration. There are no words. Thank you for reminding me how precious life is. Peace to you and your family.