My mystery rash reappeared the day after Christmas, 20 months after my last outbreak. I recognized the sensations immediately: the tingly feelings in my hands and feet, the itchiness on unmarked skin. I tried to be positive, but after the girls fell asleep I curled up in my husband’s arms and cried. The next day a cluster of itchy bumps appeared by my knee. The day after that swollen blotches of reds, pinks, and purples paint-balled my arms and legs, the palms of my hands, the soles of my feet, and even my joints. I was covered. Walking was difficult. Sleeping, impossible.
I knew I needed to get a biopsy before taking any medications, because the only medication that would offer relief was a steroid that changed the make-up of whatever it was. But it was the week between Christmas and New Year’s. My dermatologist was out of town. The doctor at Johns Hopkins who gave me her bat line was no longer at the hospital, and my doctor’s office didn’t perform biopsies. I was sure I could find a way to get a biopsy if I really pushed it, but my girls were home all week. The pain and itchiness was all consuming, and since it was all over my body, I quickly sunk into a sense of helplessness. There was no way I’d make it without relief.
Physical mess aside, I struggled with finding the balance between being honest with my girls about what I was going through, and not scaring them. I mean, it wasn’t cancer or anything. I wasn’t dying. The medication would eventually suppress my skin into submission. But it was really scary to look at, and I couldn’t go two steps without itching some part of my body. Plus the woman in me wanted to be Super Mom. To meet all the needs and hide the hideousness of my skin. I’d hidden it before, while my mom or husband played Need Meeter, but the girls were older now. And not blind.
So I let them in. Not all the way, but far enough that they’d understand why I looked the way I did and why I couldn’t spend much time with them. They watched as I was examined at the doctor’s office, and witnessed yet another professional’s eyes bulge out at the sight of my skin, and heard her apologize for having no answers. ONE saw my shoulders sag as I was handed the name of another doctor to see, and piped in with some of her own disgnoses: maybe she’s allergic to something at Christmas. Or maybe she accidentally rolled around in the pink stuff hanging from the ceiling in our attic. Doesn’t that make you itch? When we got home the girls each said little prayers for me, and then entertained themselves while I spent my afternoon numbing my hands and feet in ice water.
In the middle of this TWO wandered into the room. She stood several feet away and watched me. I smiled at her.
ME: I look pretty scary, huh?
She nodded her head. Tears filled her eyes as she took in my arms and legs. I looked down at my skin and tried to imagine how I would’ve felt if I’d seen my mom looking like that when I was four. When I lifted my head again she was standing next to me. She looked right into my eyes, took my hands, kissed my speckled fingertips, and rested her cheek in my swollen palms.
TWO: You are the most beautiful mommy in the world.
I don’t know if it was the conviction in her small, sweet voice, or how much I needed to be told that I wasn’t the monster I felt like, but I started to cry. I thanked her in whispers as she climbed into my lap and wrapped my stained arms around her. She turned her little face up to me and smiled. “You are my beautiful mommy.” And even though I could see my skin in the periphery, and I could feel the burning and itching radiating through my body, I was grateful that I’d let her see me this time. Because in being honest, her eyes were able to locate the part of my heart lost inside my skin. And in that moment I felt her words. I clung to them. I believed them.
I was beautiful.
©2012 CEK. ALL RIGHTS RESERVED.
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One more week until auditions for SpeakeasyDC’s Mother’s Day show- Bad Mommy Moments: A Storytelling Playdate for Moms! See this post for more details, or email Amy Couchoud at coosh(at)speakeasydc(dot)org for an audition time.