It’s all skin deep

.. At least, that’s what I’m hoping. Something happened last week that absolutely broke my heart. As you may know, K has a condition called Neurofibromatosis or NF (NF1 to be precise). While getting dressed one morning, K happened to notice one of her many café au lait spots.

She started to whine a bit at it, so I told her – “Don’t worry, honey, it’s just a dark spot, nothing to worry about.” She started to cry a little as she desperately tried to “wipe it off.” I think I calmed her down by telling her that mumma had spots too (luckily, I have a cafe au lait spot on my stomach that I could point to), but I suspect this conversation will happen many times over the next several years. And it breaks my heart, because I honestly thought I would have at least another year or two before she started to notice that there was something different about her.

I’ve worried about this moment since she was first diagnosed. While NF has the potential to be mild for many patients (and hopefully will be for K!), at a minimum, the condition can cause cosmological concerns. Already, at two years old, K has dozens of cafe au lait spots. Most are on her torso and won’t typically be seen, but she has at least half a dozen that are visible on her limbs or her face. Very few kids want to be different, and kids who are physically different least of all. I can hope that kids won’t be cruel about it. But I know that they will at least be curious, and that will probably make K uncomfortable.

Already, I’ve had a four-year-old ask me why K has spots on her body. My answer is usually to point to something specific that’s different about me, or someone else around me. To show that everyone has something that’s a little different. But I won’t always be there to defuse the situation, and I just hope that K recognizes that it really *is* skin deep and nothing more – and I hope even more fervently that the NF stays skin-deep too.

2 thoughts on “It’s all skin deep

  1. Pingback: Keeping Perspective: Flight, Fright or Fight « Practical Whimsy

  2. Pingback: NF? What NF? « Practical Whimsy

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