Like the majority of kids, Eli loved Halloween. He liked the candy, but I think he mostly liked to be someone else for a little while. He liked to wear a costume and have people recognize him for whatever that character was. He was non participatory otherwise, so it was pretty
obvious that dressing up in a costume for Halloween was important to him. An escape for a bit I guess, a little break from being Eli. I don’t think he could have ever voiced it that way, that he would have analyzed himself with that motive, and it’s just an opinion of mine as an onlooker.
Very early in Eli’s diagnosis, like within the first three months of the entire “journey,” I offended someone with something I wrote in a blog post.
She messaged me her complaint - an impassioned complaint - and left the group (the Facebook page that was growing in support of Eli). I was not a stranger to being disliked or on the proverbial outside due to my blunt tongue before Facebook and am not now, nor am I bothered by intentional or unintentional ostracization for whatever reason, but this hurt. Well, the realization hurt. The realization that I had just lost Eli a prayer because I thought I was funny. The realization that I had to be someone else or risk losing members of the army that we needed praying for him. It was a lesson in “politics,” I guess, to learn the art of tongue control, to gain supporters and not lose them. After that complaint, I held a steady line within thousands and thousands of words that I wrote over almost six years and did not cross it again - well, I might have pushed it, but not crossed it.
Now, with Eli gone, my tongue is a little lost and confused. The reins I’ve held for so long are slipping, and I feel less inclined to coddle and please. But, yet I’ve seen too much to plead ignorance of plight. My perspective is too vast to plead ignorance of awareness. My experience is too catastrophic to plead ignorance of understanding. It is a bit of a struggle for me to stay away from that line without Eli here as the potential victim of my folly.
I continue to pray for the kids and parents of the childhood cancer world, thank you for doing the same.