“This is actually not a negotiation,” I say for the second time as my seven-year-old daughter, Wren, looks up at me in shock.
“So I can go, but I can’t spend the night?”
“Or you can choose not to go at all. Your call,” I answer, trying for a smile that is both kind but stern enough to express that the conversation is over.
“Okay. I’ll go,” she concedes, trying to be okay with this limitation.
“Look, one of your other friends is being picked up too. You’re not the only one. And you’ll be partying for hours before I get there,” I say, wanting her to feel excited.
“Is this about my Celiac?” she asks, and I take time to think before answering.
“Yes and no. I just like all my kids back in their beds before sleep time. It’s not all your Celiac. I trust you, okay?”
She nods, but I know somewhere inside she has her doubts.
The Celiac diagnosis came when she was two, and since even small amounts of gluten can poison her body, many activities became off limits for the foreseeable future. The foreseeable future poured out in front of us further than we ever imagined, so I always ended up being the parent who stayed at the birthday party to make sure Wren was the only one who touched her food, that it wasn’t mixed up with anyone else’s, that she didn’t come into contact with Play-doh. There was no way to ask another adult who was supervising other children to take on all the risks, and I didn’t want to. I needed it to be me.
Wren caught on quickly, learning what she could and couldn’t do, but even adult Celiacs make mistakes. She has a fixation with chewing on her fingers, a detriment for any child who has food allergies. When she’s excited she lives in an imaginary land that prohibits her from paying attention to what her hands have touched before coming into contact with her food.
On the other end of the spectrum, she also sporadically suffers from obsessive compulsive disorder to the point that she fears eating because she’s afraid she’ll contaminate herself. However, we did start to notice at some point she took the reins, became a partner in managing her condition. Relief and terror washed over me in equal portions.
Still, if she is going to have a problem or a reaction of any kind, it’s at night. Stomach aches, dizziness, emotional outbursts due to low selenium levels all occur when darkness devours the day. Symptoms of possible cross-contamination, if there are any, meet us in the evening, and since I’m there every night, I can start the process of using supplements to fix what we can on the rare occasion that occurs.
I think Wren understands this even if I don’t say it. In the light of day it’s not hard for me to agree that the food allergy life seems pretty manageable. But I haven’t found my footing in the darkness. The only way I know to even the score is to keep her close until the sun peers over the horizon to welcome us to a new day.
She jumps out of the van before I have a chance to grab her bag of gluten-free pizza, gluten-free cupcakes, and gluten-free sunscreen. By the time I make it to the door, she is inside with a group of children surrounded by squeals that can only emanate from seven-year-old girls. I stand at the kitchen island and enjoy mom talk with my friends, wondering when is a good time to remind the adults who will be with her of all the rules related to avoiding gluten.
“Mom,” I hear and look down to see Wren staring at me, impatience written across her furrowed brows. “Are you going?”
“Yes. I’m just visiting with friends first.”
“Okay, because you can go. I know where my food is. Will you come pick me up pretty late?”
“I’ll figure it out with Gracie’s mom, okay?”
She nods. “Okay. Well, I love you and goodbye.”
I try not to laugh as I say, “Okay, I get the picture.”
Before I leave I tell Gracie’s mom, Becky, that Wren is the only person who can touch her food, that she needs to wash her hands thoroughly, that she has to wear gluten-free sunscreen so there’s no possible way for her to get contaminated. Then for the first time in seven years, I leave her at a birthday party alone.
When I return home my husband and I resume pizza and pool night with our three younger children, a summer tradition that will end when the pool in our neighborhood closes in September.
I sit on the steps watching our three-year-old twins bob around in their floaties while my five-year-old son shows off the new skills he’s acquired at swim lessons. My routine of counting heads goes awry when I get to three and there is no four. Wren is in a pool in another neighborhood.
“This is weird,” my husband says, getting the words out before I can.
“I’m really glad she went. I was nervous, but I’m sure she’s having a blast. Still, it feels different.”
My husband nods just as one of the twins asks to ride across the pool on his back.
As my neighbor and I discuss the challenges of creating art while raising kids, I relax, take in the clear blue of the water and the laughs of youth surrounding us. However, despite my best efforts, I feel adrift. Wren’s absence is like a ghost limb, and it’s always a surprise to feel her so acutely but to look up and find she’s not there.
It occurs to me as we dry the kids off and put only three little ones down to bed that if her short absence leaves me feeling so unmoored, my constant supervision probably feels to her like a suffocating cloud blocking out her chance for experiences I don’t supervise. This knowledge keeps me grounded through the hours she’s away, but I still find myself anxiously leaving too early when it’s nearly time to pick her up.
When I get closer to the house, I text the other mom with a no-sleepover policy to ask when she is arriving to pick up her daughter. Her replies lights up my phone: ten minutes away.
Not wanting to be the first parent who makes their child leave, I steer the minivan into a parking lot overlooking a field down the street from the house. As I stare out into the sky painted an array of blues and pinks, my phone lights up with another text. It’s from Becky, the mom holding the party.
Can Wren blow up a balloon?
I’m momentarily stunned by the request because it’s rare that an adult without a Celiac under their roof would have any idea to ask about everything that touches the lips, even if it’s not ingested.
Quickly pulling up articles on my phone, I confirm what I found the last time the balloon question came up: manufacturers are using corn starch, therefore avoiding the gluten issue. I text back an enthusiastic yes.
My phone lights up again with the words, She’s so excited!
I’m at peace with the idea of Wren doing something normal all the other kids are doing before fear overtakes my thoughts: What if someone who had gluten on their hands touched the balloon first? What if Wren asked someone for help and they put their mouth on it and gave it back to her? What if? What if? What if?
Placing my phone in my purse, I spend the next five minutes breathing deeply and refusing to retract the yes to the balloon. Adding up the list of everything I say no to on a daily basis, I decide to let my yes stand and to let my girl prove she knows her way around the rules.
My friend and I walk through the doors together to take our daughters home, and there is a dance party going on the living room. And balloons, plenty of balloons.
Becky greets me and says, “Wren told me to check with you. She asked if she could blow up a balloon, then she said I needed to check with you, and it was okay if the answer was no. She was very mature about the whole thing.”
I’m momentarily shocked, though I don’t know why. Of course it was Wren who initiated the balloon text, not because my friend wouldn’t have but because Wren thought of it first. My eyes find her, a half inflated balloon in her hand twirling to techno music unselfconsciously with her tribe. It’s such a perfect, delicate time that the future will devour, so I work to memorize her brown hair and long, bony legs, the gaps in her smile from missing teeth, the balloon, a souvenir, a reminder of how far she’s come.
We leave a few minutes later, and Wren doesn’t launch a single complaint. She’s elated and sweaty, talking continuously about the fun she had. I hold my breath and don’t ask if she washed her hands before she ate or if she was the only one who touched her balloon. Halfway home in the middle of her plying me with questions about if I’ve ever seen The Little Rascals or if I’ve ever met Gracie’s cousins she says, “Oh, and of course I washed my hands and ate my pizza cold so I wouldn’t take a chance of crumbs in Gracie’s microwave. And thanks for the balloon. I was super excited when you said yes. I would have still loved you if you hadn’t, though.”
“Thanks for that. And thanks for telling me you stayed safe, but really, I had no doubts,” I respond and see her face light up further in the rear view mirror. “I’m still glad you’re coming home tonight. I know you could have handled the whole night, but the pool was kind of lonely without you.”
“Oh, I was in Gracie’s pool! The deep end, like the really, really deep end! Yeah, Gracie and I…” and she’ off into another story, a story I’m not a character in, and I’m glad for that. She’s in the deep end for sure, in the uncharted waters of handling a chronic disease solo, but she’s okay. She’s not bobbing or thrashing, being drug under and gasping for air. She’s in the deep end because it’s where she belongs, where she’s prepared to be. And I’m still sitting on the steps trying to let her go.