Wednesday, May 2, 2012

A Beads of Courage Conundrum

"Sometimes you're the windshield, sometimes you're the bug."

Last night I finally understood the expression "clusterfork" except the fork isn't exactly a fork if you know what I mean.

Back story. I donate beads to Beads of Courage, a nonprofit arts-in-medicine program that provides beads to children fighting cancer. Kids earn beads for their "Acts of Courage" as they reach treatment milestones - or sometimes when they just have a really bad day. Beads help kids tell the story of their journey back to wellness. And sometimes the beads comfort bereaved parents and help them remember. But mostly the beads seem to have a healthful encouraging influence on kids who are going through hell.

About two months ago, a mom of a boy with lymphoma purchased two of my beads from my Etsy shop. One bead was for her son and a more or less matching bead was for a silent auction fundraiser. She didn't ask me to donate the beads, she bought them and later she told me my bead raised $200. Wow. I asked if I could make her boy a special bead and asked the colors of his favorite sports team. The bead I made was similar to this one.

A couple of weeks later, this mom bought two of my fish beads, one for her boy and one for his little sister. I only just learned that BOC has a sibling program. This little girl had to leave school to be home-schooled - to reduce the risk that she'd carry germs home to her brother and his compromised immune system. After buying the fish beads, this mom mentioned that mouth sores were one of the punishing side effects of her son's chemo and that she had been looking for a blowfish bead.

I googled blowfish images which gave me the idea of making a hollow fish bead with bumps. And when I finished the first one, he was pretty darn perfect. And then this mom bought several more of my beads, saying these were for her. Mom's need courage too. So I sent along the blowfish, which looked something like this dude.

So this mom and I had been conversing via Etsy and she told me about a contest she was conducting at her son's school, where the students were drawing designs for beads that they thought would give a sick kid heart. She was also raising funds to sponsor an artist to make 25 beads of each of the five winning designs. I suggested that before the finalists were finalized, it would be wise to ask a bead maker how well the designs could be interpreted in a bead.

I did not mean that that bead maker should be me, but she sent me scans of the top 15 contestants. I did not judge them, just commented on each one as to how it might (or might not) transfer to a bead design. And by happy chance, the bead designs I thought would be best were the very ones her son liked best.

At this point I was (and still am) undecided about whether to take on this project. Consignment work is hard, even when it's easy if that makes sense. You want everything to be perfect and you wind up making a lot of extra beads to get them just right. And making 25 of the same thing is hard for many creative people, although I have been known to get obsessed with a design - cats, owls, goddesses - and make dozens before I stop and never want to look at one again. Or at least for a while. I have recently started making ginormous florals again after a two year hiatus.

OK, I'm almost to the clusterfork, so hang in there. On Arpil 23, the Wautoga Democrat published a story about this boy's journey, right down to the contest, with my name right there in print too. Cool. I thought. Except BOC didn't see it that way. They saw it as stepping on their toes, and they completely missed the point that this mom wanted to sponsor an artist (or artists) to make these beads to donate to BOC. Somehow they got the idea that she was buying these beads to hand out herself. Which, when you think about it, is entirely within her rights. Buy beads. Give them as you wish. That's America.

So as I heard it, a BOC representative confronted this mom while she was in the hospital with her son who is fighting for his life. And told her that she could not do anything without their approval including giving newspaper interviews. And that she should have told them that she was having contact with their artist.

If it weren't so shocking and sad, it would be funny.

Among other things that were reportedly said, the BOC rep asked this mom if she would consider donating the money she had raised so that artists could have it for supplies to make more beads instead of having the beads made and then donating them. Which I think is pretty interesting, considering that I am unaware of BOC funding any artist beads. For a short while they did purchase purple heart beads but that ended because they said they no longer had funding for artist beads and (I'm quoting the Director of Bead Donations here, in a statement made online today), they "recently moved to a commercially produced Purple Heart as well as Butterfly bead[s] for most cases." 

So here we are. In a limbo of sorts, since the BOC rep suggested that this mom just pay me to make her sone and daughter each a set of the beads and then stop there until they figure out what to do. Nice of them, considering I have never committed to making all 125 beads, no compensation has been discussed, and as I said, I'm undecided if I even want to take it on.

What I am really hoping here is that BOC comes to its senses, and comes back to this mom with an apology and sincerely thanks her for all she has done to promote the BOC program. And she has done so much, because, as she told me, holding his beads helped her son cope when medication was insufficient to control his "bad headaches and the worst body/bone pain he has ever had." Because in her words, “[e]ach bead is a memory of strength.”

So, in case you are curious, here is my first interpretation of the winning designs. And no worries. I will continue to make and donate beads to BOC. Because, to paraphrase Ben Cumberbatch again, it's about the work. And what I mean by that is, it's about the kids.

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