6.04.2009

Duel Dual

Batten. Battle. Ironic, how similar these two words are. Most days it feels like a war, but we're weaponless against the disease.
Recently, Andy started referring to our family members, the group of people who keep Celia overnight for us when Andy works, as Celia's Army. They've all memorized the pharmaceutical drill, have tactics for keeping her comfortable, and gallantly report for duty week after week.
And she fights. She fights with the strength of a much larger girl, her perseverance is remarkable, but her arsenal falls short.

The only way we can conceive of combating the disease is to help raise awareness of its devastation. We wrestle with the idea of whether we should ask others to help. We wrestle with lots of things young parents shouldn't have to - decisions about drug trials and end of life care, genetic counseling and funeral planning, investing in medical equipment and asking for donations in a struggling economy...
But if we don't ask for help, we remain weaponless. And that's a tough place to be. So, this post serves dual purposes. It makes us feel better, because it gives us a chance to feel like we're doing something, and it gives you, our readers, our extended infantry, something to do too, if you're willing. This weekend, June 6th and 7th, are the second annual Batten Disease Awareness days. Would you please consider one or both of the following, to help us raise awareness?
1. If you read our blog, you know about Batten Disease. Please mention Celia's story to someone else, someone who may not know about Batten Disease.
and
2. Visit the BDSRA website. There are ways, described there, you can contribute - using your KrogerPlus card in Ohio or ditching Google for GoodSearch and setting BDSRA as your charity, for example - that don't require you to spend a dime, but that can support further research, vital to combat the devastation of the disease.

Jenni & Andy

6 comments:

Tsquared417 said...

I will put this on my blog tomorrow! :)

Tsquared417 said...

I clicked before I was ready! :)

You MUST ask for help. It's good you do. Celia would want you to, right? She'd want Mommy and Daddy and Tucker to be happy too so when you are together you can truly enjoy your time together.

Christy said...

It's pretty sad I didn't know about the awareness days. I'll be sure to post something on our blog too. People feel like they're doing something when you ask for help. It's good to ask. I didn't say it was easy though. ;) Thanks for the information. And the sketch of Celia on your sidebar...beautiful!

Friend Family said...

We want to do anything we can to help! Keep letting us know what we can do! Loved holding Tucker tonight, only wished there was more time so I could've held Cel too!

Gibby said...

Came over from Elastamom...my prayers are with you...

Nick and Erin said...

Jenni - I "borrowed" a pic of Celia from Mary's blog to include in a post of my own. Please let me know if you would prefer I not include it. Just wanted you to know that I am posting her beautiful face on my blog!