Lilly’s scar is in the lumbar region, rising up from her tailbone at least 3 or 4 inches. It’s surrounded by a pinkish-red halo at the bottom, where the original lesion was, a bubble of spinal nerves that protruded from her body. The original repair surgery left a fairly delicate scar (though it seemed a little horrific in a Frankenstein kind of way when the stitches were still in as an infant), round and bulbous at the bottom, and then a thin line rising up like a vine, with a small feathery shape at the top. It’s not so bad, I thought. When she grows up, she can get a tattoo around it, make it look like a pretty flower. Naive of me to think that she wouldn’t ever need another surgery.
At 3, she had tethered cord surgery. The neurosurgeon had to revisit the area, slice through the original scar tissue, butcher it a bit more. The resulting scar is thicker, a little longer; you can see the cross-hatch stitching along the sides, like a zipper. No delicate flower anymore, though it faintly shines pearlescent. No flower tattoo to pretty it up, and who knows if she’ll need surgery again? Better to look at the scar itself as a tattoo. I’ve heard them referred to as “badges of courage”, though obviously she remembers neither surgery. There was no opportunity for bravery; but we like to make heroes of our children.Lilly had always been curious about the scar, wanted to hear the stories behind the surgeries. Only now has she become aware that not all children have these scars. She’s “different”.
We solved the diaper dilemma with Goodnites underwear (normally used by kids who have bed wetting problems at night, utilized here for bowel accidents during the day). They look like normal underwear, and it’s all right if the top shows over her jeans. But the scar still shows now and then, a pale caterpillar crawling up from below the waistband. I try to find long shirts to cover it, but the shirts still ride up sometimes when she sits or bends over. She’s not distraught over it yet, just aware. A day will come when she will do anything to cover it up so no one sees.
I will help her in this, but I’ll also encourage her not to be ashamed of it. It’s not a brand of shame, any more than it’s a badge of courage. It’s a scar she was left with because of two surgeries. That’s all. She can look at it as ugly or beautiful, but it’s a part of who she is, part of her landscape. It’s hard enough raising a girl who accepts her body. Scars (and disability) make it harder.