The knuckles on my daughter’s hands boast caked blood that make her look like the winner of a back alley prize fight. Her dry flesh spreads itself as far as it can, creating hills of pink rashes that stay in place even when the blood is washed away. My husband and I work like doctors rubbing on coconut oil, tending to the white flecks of skin hanging on like butterflies before departure.
“Pink looks healthier than the bright red,” I say, trying to sound optimistic as we finish applying the last layer.
My daughter runs off to play, hands greased and movable. In her absence my husband asks “How did this happen?”
“I told her to wash her hands.”
We both know I told her more than that. I told her to wash her hands before she ate or after she used paint; to be careful in cross-contaminated environments and to not let other people touch her food; to keep her hands out of her mouth at all times. I told her more than she could handle; her torn and broken hands are proof of that.
Yet not telling her would have been its own form of abuse. People with Celiac disease do have to avoid every crumb, beauty product, and modeling clay that has gluten, a substance found in wheat, barley, and rye. It’s a way of life, one my seven-year-old daughter started learning about early since she was diagnosed at the age of two. Teaching her to stay safe meant teaching her protocol, and I took on that job like a drill sergeant with a doe-eyed new recruit. She was molded and drilled, reminded and reprimanded, her training so intense it seemed her life depended on it because it did.
When the anxiety and obsessive compulsive behavior started years after her diagnosis, I was surprised. Research revealed a cause fairly quickly. The National Foundation for Celiac Awareness found that kids with Celiac who had to follow a gluten-free diet were more prone to deal with anxiety and depression. The constant need for attention to detail concerning cross-contamination also caused a risk of phobias and OCD related to cleaning surfaces and utensils before eating a meal.
My daughter took it one step further. She obsessed about cleaning her hands, hands that might touch her food, by rubbing off her own flesh through repeated washing in an attempt to keep herself unharmed. The irony, it isn’t lost on any of us.
“Every child suffers anxiety when they lose something,” I tell my husband as we discuss the situation before bed. The day, full of tears and bleeding knuckles, has left us shaken. “She lost certain foods, but more than that she lost the idea that eating is safe.”
“She also has the responsibility of dealing with this for the rest of her life,” my husband adds.
“True. But maybe dealing with this mental shift will prepare her for the future. I mean, kids lose safe places throughout their lives. They learn about stranger danger and war. Parents divorce, grandpa dies.”
“It just seems like the Celiac ripped the carpet out from under our girl too soon. Our house is the only place she doesn’t encounter gluten, and somehow she doesn’t even trust that it’s safe here anymore,” my husband adds.
Mentally, I tally up all the safe places that have now become sources of stress: church communion, social events involving food or art activities, overnight camps, sleepovers, eating at restaurants. The list goes on. Not all have been lost, but each one has been modified from its original version.
Still looking for a bright side, I say, “All those bubbles kids live in where Santa exists and dogs go to live on the farm, they have to end. The idea that all food is safe, well, this is just that bubble popping for her. Prep for the real world.”
“I guess,” my husband responds without enthusiasm.
I turn to look at him and read in his eyes what we’re both thinking; the panic, it’s not preparing her for anything.
The constant internal turmoil is a slow torture.
Though we created a safe place for her at home and taught her to create safe places for herself in the world, we were forced to take so much away. She lost an innocence, a state of mind.
“The safe place she’s panicking about losing, it goes so much deeper than food,” I say, all my optimism gone. “I’m not sure we can get it back.”
Later in the week I watch my daughter try to pull out a chair with her elbow, her hands pointed to the ceiling. I walk over to her, gently shake my head, but she can’t stop. The fear has taken over.
“You’re safe here. You can touch the chair.”
“No, I want to sit down and eat my food, but if I touch the chair I’ll have to wash my hands all over again!”
“I will! I’ll get sick!”
Lifting my girl, who is still only 40 pounds, I take her to the recliner. She wraps her arms around me but still keeps her hands from touching my shirt. We rock in the chair where in simpler days I used to supply all her food via breastmilk. Her chest is against mine, our hearts near mirror images. The recliner bellows out a creaking melody under our weight, a rhythmic lull that invites slow breathing. The tension starts to fall out of her muscles, peeling off one layer at a time.
It’s tempting to offer false reassurance, tell her it will all be okay. I don’t. What she’s going through will not be banished with words the same as her chronic illness will not be gone tomorrow. Instead, I hold her, offer to bear witness to her pain. I can’t give her back what the disease took, nor can I stop future heartbreak over unrequited love, mean girls, or life’s many rejections.
But I can work endlessly to replace it with something more, my presence, my heart beating out a steady rhythm telling her no matter what she loses, I will be her safe place.
Kristy Ramirez is an aspiring writer who juggles words with raising four kids, ages 2-7. She lives in Texas where she blogs about her family’s adventures at livesinprogressnow.blogspot.com. Her goals are to finish the novel she has been working on for five years and to love people better every day. Find her on Facebook, Twitter, and Instagram.
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