My daughter was diagnosed with Celiac disease at two, making all foods and items that contain gluten off-limits for her. We began the tedious process of cleaning out our pantry, relearning how to cook, and constantly monitoring our daughter, Wren. She was malnourished, and our primary job was to make sure she didn’t ingest any food that would act as a poison when it hit her body.
Sleep deprived and also caring for her six-month-old brother at the time, I longed for the days when she knew better than to pick up a Goldfish cracker off the ground and eat it, when she could read gluten-free labels and monitor her own food intake.
“This won’t be such a challenge when she’s older,” I told my husband. “She will know how to handle her condition, how to handle food, and the constant mental strain from being the overseers will lift a bit.”
He agreed, and we pushed through the years when Wren didn’t know how to avoid cross-contamination and didn’t know why Play-doh was on the never list for her. We took over, kept her safe, and taught her how to do the same as she grew ready. She learned and largely took charge of her food journey, understanding what was safe for her and what wasn’t.
But the journey became difficult in other ways even as certain aspects were simplified. Six years later, we are now in the thick of dealing with the social elements of food allergies with a tween.
My daughter proudly took her banana to the Sunday school class I supervised when she was a toddler. She ate it as all the kids around her consumed gluten-filled animal crackers and never complained. The source of the pain she had endured was in that cracker, and she didn’t want it.
“Social situations are easy,” I idiotically bragged to a friend. “She doesn’t mind being unique, and she hurt so much in the past that she doesn’t even want that food.”
Six years later, we have thankfully moved away from the pain, the malnourishment, the constant feeling of being physically unwell. But now I have a tween – a little girl one minute and an emotionally involved ball of big feelings that looks strangely like a teenager the next. We are deeper into the emotional component, the one I can’t fix with an alternative food.
This is not, in fact, easier.
Wren’s friend talks animatedly about the St. Patrick’s Day feast she wants us to attend next year even though it’s July and we are walking back from the pool in oppressive Texas heat. She tells of everyone bringing a dish, the table full of overflowing bounty, like the feast tables in the Harry Potter books.
Wren walks along, not speaking, looking at the concrete, and I wait for her to explain why she’s not excited about this. She doesn’t.
“We can’t do potlucks. They’re a bit tricky for Celiacs,” I say, kindly, knowing her friend didn’t think about this before sharing her excitement.
“What if someone brings gluten-free cookies?” she asks. And I know she would do this for Wren, just to make sure she was included.
“Cross-contamination – it’s too big of a risk. If other people have already touched them, well, crumbs can kill, right, Wren?” I say, shooting her a smile as I throw out the line we’ve drilled into her brain.
“Yep,” she responds, that older girl edge making an appearance. “This is why my life is bad.”
I don’t argue, though there are many reasons her life isn’t technically all that bad. We can afford the price of gluten-free food, the services of a naturopath when her thyroid or gut bacteria go off course. She is well, the hair she lost fully regrown, her distended stomach of the past now a normal size.
But I can’t argue that this component, being left out of food and the fellowship it brings, is bad. And it’s forever. Her friend was only talking about food peripherally when she spoke of this potluck. Her focus rested on the act of feasting, connection, and comparing notes on what tastes best. Food was just the medium to this fellowship – a medium Wren cannot enjoy.
I sit on hold for a full four minutes staring at the words in all caps on the medical release form. I signed Wren up for day camp four months ago, confident that she could carry her own snacks and lunch, wash her hands before meals, and partake with hundreds of other kids as they sang songs and played games from nine to four each day.
Then the medical release form landed on my computer screen four days before camp started, and I couldn’t breathe.
“I can’t sign this,” I told the woman on the other end of the phone. “It says I have to give you permission to administer medication to my daughter, and I can’t. Besides being allergic to tons of meds, most of them contain gluten. I would need to be contacted first. I can’t sign this.”
I expect her to say she understands and that this is a common problem. Instead, she puts me on hold with an unsteady voice that tells me this may mean trouble.
What can I offer to fix this? I think as I sit waiting. If she can’t go to camp, what will I do? How can I bargain her out of the emotional hole that she will fall into? Ice cream every day? The puppy she’s been begging for? More swim lessons?
I know even as the possibilities float into my mind that all of them will fail because I can’t replicate this experience. She will blame her Celiac, and she’ll be right. There is no replacement for a week at day camp with other kids doing normal things. It’s not as easy as replacing a gluten-filled graham cracker with a gluten-free one.
“Ma’am,” I hear as the girl comes back on the line. “We can work it out. Your daughter can still come.”
I release the breath I forgot I was holding as tears fill my eyes.