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Let's start a conversation

Today I had the most amazing conversation with one of the most amazing mothers, Amy, of one of the most amazing kids... Isla "The Fierce," all about the stigma surrounding being bald and how others react to her child being bald. I started by sharing with her that as an adult female, the general look I have been receiving from strangers is one of pity or curiosity. Unless I speak up, which I do most of the time, that I have shaved my head by choice and explain why (less than 4% of cancer research is for the children - aren't they worth more than that?), the strangers I encounter generally look away quickly after giving me a sad smile. I am guessing that most people assume I have cancer myself. And if they see my "Bald by Choice" or "Ask Me Why I'm Bald" pins (courtesy of St. Baldrick's Foundation and Ammy Doeden), most are apparently choosing not to say anything. Why is this? What do I represent to them that they are so afraid of facing? Or are they just afraid to say the wrong thing and therefore upset ME?

Amy shared about a recent experience with her daughter Isla, who was in a class with other children that really had no clue how to react to Isla being bald, and the parents of those other children were visibly shaken, unsure of what to say to their kids and going out of their way to get their children to just be quiet. The whole scenario was very awkward for everyone involved. So I asked Amy, isn't it OK to talk about it? To ask questions? And her answer was a resounding "YES!" It would be so much better to have a conversation, even if awkward, than not saying anything at all. One thing I remember Avery's mom, Dana, telling me is that there is really nothing that one can say or do that would offend her, because she has been through it all. When I shared that with Amy, she agreed with a bittersweet laugh. Yes, there is nothing that you can say to a parent of a child with cancer that would be worse than what they already know or have experienced. So don't be afraid to start a conversation.

Without going into a lot of details, I myself have experienced some feedback from people I greatly respect about being a Bald Princess that I have really taken to heart... how it may not be for everyone... that in some cases, especially cancer patients, it may be in the child's best interest for me to wear a wig and maintain an environment that is as "normal" as possible. If this is what the parents want, then of course I will honor their wishes! And let's face it, a lot of kids may just want to meet Elsa (I say that tongue in cheek, but it's the sad truth). I am still sorting through the intense emotional response I have to this reality.

In the hospital, they hand out (when supplies are available) a Bald Barbie Doll. The first time I saw one was just last week and I was so excited! "Where can I get one?" I asked, thrilled to go out and buy one for my own little 5-year-old girl. I was shocked at what I found out. They are not available to the public. Only donated to be given out at hospitals. WHY? Why aren't they available to the public and have a portion of the proceeds go toward much-needed funding for pediatric cancer research? I would pay TWICE the amount for a Bald Barbie than a Barbie with hair! And more importantly, it would give my own little girl the opportunity to play with a doll that may not have hair but is still really beautiful and cool, and maybe even spark a meaningful conversation.

Why does being bald have such a stigma attached to it? defines stigma as "a mental or physical mark that is characteristic of a defect or disease." Why can't we just look past a bald head and see the beauty inside?

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