Andy tried, as he spoke at the conclusion of Celia's Walk yesterday. He said that although it's easy to focus on all the things we've lost, all the things we'll never have with Celia, it's also hard not to miss all the blessings, all the things we may never have known if she weren't ill. How most days, even when we feel the heaviness of her fate, there are so many things tipping the scales toward good. How our gratitude often outweighs our sorrow.
All of your gifts, actual and emotional, mean so much to our family, especially on days like yesterday. You dug around in the deep pockets of your hearts, in the hidden places of your budgets, and you made a difference in the battle against Batten Disease. And we are SO grateful for you, and for your generosity.
As they got ready, A's mom was reminding her about the special walk for Celia - how lots of people would gather to walk together. Her mom was about to explain that everyone would pay money to walk and then the doctors would use the money to make kids like Celia better, when A excitedly exclaimed, "And while we walk we'll ALL think about how to help the doctors make Celia better."
On the way home from Celia's Walk, the G boys were talking about what Batten Disease has done to Celia's body. They remembered, and understood, that she could still hear them even if she couldn't see them anymore. They were curious if her heart was "hurt" like their Grandpa's was after his heart attack. Their mother explained that Celia's heart was still working. The boys were quiet for awhile before M concluded, "So Celia is like Santa and like God. She has a good heart and can hear what we say even if she's not near us."
Given the option of going to church or to the walk, sweet E decided that she'd go to the walk and that "God will understand."
Special thanks to Holt Crossing, where I taught for seven years, for Celebrating Celia the week leading up to the walk, and for making such a large contribution toward research.
JEB
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This afternoon, while Celia adorned my lap, I told her stories about many of the amazing people who helped organize the walk and who came to walk with her... old friends and family from far away... and wouldn't you know, she shared several great big smiles with me!
Damn, you wrecked my mascara.
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