When Lilly was born, I waited for the joy to wash over me like a waterfall of pure bliss. After all, that’s what new parents are supposed to experience, right? All I had to do was cradle my precious child like the beatific, serene Madonna I’d seen in so many works of art, and take my place in the heavenly halls of motherhood. Right?

madonna and child

Well, no.

Lilly was born in a planned C-section because of the spina bifida. Although we’d been aware of the SB since the fourth month of pregnancy, I was still a nervous wreck. I was afraid of the surgery (my first ever), afraid of the new demands of motherhood, afraid of the SB and all it entailed. Still, I held out hope for that proverbial wave of maternal joy to make things right; and when the nurse showed me that little elf-faced bundle before whisking her away to the NICU, I did cry a few tears. Tears of relief, of amazement, and yes, of a deep, abiding love, a love I’d felt for my child since conception.

But joy? Not quite yet. The closest I’d come at that point was during the first few months of my pregnancy. I loved being pregnant. I’d heard horror stories from so many women who had debilitating morning sickness. Not me. I didn’t throw up once. I felt amazingly alive and beautiful-my hair and nails were full and glossy, my body became soft and rounded, without an ounce of excess weight. Just that baby bump beginning to show. I truly glowed, as the expression goes.

The first flutterings of movement in my womb, evidence that an actual child was growing in there, was surreal and thrilling. The news of the spina bifida at four months was a crushing blow and shadowed the rest of the pregnancy, but I was otherwise healthy and tried to enjoy it as much as I could. I tried to take joy in the unfurling of autumn around me, my favorite month, but all color had been drained from my world.

In the gloomy month of February the stress and worry surrounding the birth set in. Soon we had an actual, squalling, defenseless infant under our care, a baby with a wound on her back, with two parents who had no idea what they were doing. It was all so overwhelming; I was anxious and weepy.

I remember one night during that fumbling, sleep-deprived first month. I held my crying baby against me as I rocked her in the rocking chair. My husband lay sprawled at my feet on the floor, tired and at wit’s end, a hand touching my ankle to show he was there. Lilly wailed, and I cried, hot, silent tears coursing down my cheeks. I remember thinking, I love this child more than life, but I’ve made a terrible mistake. I can’t do this. This baby deserves a better mom.

Such were my irrational thoughts most of those bleary-eyed first three months. Joy was a rumor, a myth, something other mothers-good mothers-experienced.

And then, as spring strained toward summer, a confluence of things began to happen. We all started to get a little more sleep at night. Routines fell into place, and I started to feel less flustered, more in control. Lilly’s stitches came out, and she healed.

And she smiled. She would look at me and return my smile; she’d laugh in response to mine. I’d talk to her, and she’d burble something out of her lips, fascinated by her own sounds, testing the early waters of speech. She’d curl her fingers, flip her hand around, and watch in awe. She became amazed at herself.

And so did I. She wasn’t just a squalling, helpless little creature anymore. She was a person. Her personality began to bloom like the summer flowers unfolding all around us. This amazing person came out of me. She was mine, and I was hers, and that would always be.

That’s when joy slipped through the back door and surprised me. For some reason, I remember feeling it most intensely while we were in the grocery store one day. I pushed her around in her stroller, shopping, just doing a normal, mommy thing, and it hit me-I’ve never been so happy. It felt right, meant to be. Looking at my child, the joy bubbled up inside me, like the nonsense words that so often escaped from her little lips-spontaneous, indefinable, but unmistakably with her as its source.




flower sb

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.



My Writing Journey


Lilly is getting to the age where she can sit still and watch a full-length (hour and a half) movie, so I took her to the theater on Sunday to see Zootopia.

I’ve only seen a handful of the Disney/Pixar offerings, mostly since I became a mom. I’ve loved all of them, and this one is no exception.

Zootopia is a grand city of “evolved” animals, where predators no longer hunt prey, and the anthropomorphic animals live together in apparent peace and prosperity. Judy Hopps (voiced by Ginnifer Goodwin), a rabbit from Bunnyburrow, is Zootopia’s first rabbit police officer, something she’s dreamed of since she was a little bunny. She was the first rabbit to attend the police academy, worked hard, and graduated at the top of her class. She excitedly waves goodbye to her worried parents, hops on a train to Zootopia, and starts her new job with the…

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