“She needs to learn to advocate for herself, Mom.” I say it with such an air of authority. It’s Ula’s second day of Circus Camp down at the Panther Creek Arts Center. Cornelia organized it for all the local kids, and Ula, with her own passion for the circus, was especially excited. But she had to leave the first day when the task of juggling in a busy room tripped a storming migraine. She had to spend the day in bed.
Mom wants me to go talk to the instructor. She wants me to explain what Ula can see, what she cannot. Now recovered, Ula has already run upstairs with the other kids to start day two. Cornelia is standing next to Mom, waiting for my decision. Honestly, I never would have predicted that juggling scarves could trip a migraine. Could I have even thwarted the problem with earlier intervention?
More importantly, I feel like Ula and I are crossing a new bridge. She needs to feel the power of her independence. Part of that independence means learning to speak up for herself when she needs help. We practiced before she went back to camp that day: “Those scarves were hard on my eyes,” she rehearsed. “May I please work with bean bags instead?”
I am confident in Ula’s ability to handle this.
Maybe, I just want to feel confident in Ula’s ability to handle this.
Because while she and her sister are at camp, I have a meeting. And yesterday while they were at camp, Bob and I needed to get to the chiropractor and go meet with one of the farmers who supplies the cafe. We need to get the house ready, because Martina, our exchange student, arrives later tonight. And I’ve given nearly every day of every season for the last three years to Ula’s vision therapy and developmental needs. We’ve had no summer breaks, no school vacations. We’re both ready for a rest.
And she’s made great strides. She stays up late at night reading. She can clean her room, organize her belongings and focus when she really needs to.
So in my mind, when I state “She needs to learn to advocate for herself, Mom,” I’m thinking that this is about Ula. This is about letting go, letting her own her disability, letting her feel the power of addressing her needs. What I’m not saying out loud is the other side of that equation: This is about me letting go. This is about me paying attention to all those parts of my life that got pushed aside when I recognized the severity of her visual impairment: the attention to the farm, the attention to my writing, the attention to my husband, the attention to the other members of my family. The attention to myself.
Mom and Cornelia nod at me. They respect my decision. I move on with my day and rush to meet my 10:30 appointment.
Ula has a great day at circus camp. She pushes through her fear that another migraine will strike, and she learns new circus tricks. She, Saoirse and their cousin Evie come back to the house at the end of the day, full of stories, giggles and fatigue. They go outside to play while I make them a pot of soup. I’m tired and desperately want to go to bed. But we have to stay up and drive to get Martina when she arrives on the bus later tonight.
We eat our supper, then load into the car to go get her. We go to the bus stop where I get the message that the bus will be over an hour late. I’m getting cranky. It’s already 8:30, a half hour past may bedtime. The kids are getting punchy in the back. We decide to run to the grocery store to kill some time.
I’m ready to ring Ula’s neck. She won’t let go of the stupid shopping cart as we work our way through the store. And she keeps banging into me with it. I try to push her away, but her hand keeps finding the basket again. And we keep crashing every time we need to change aisles. She’s busy chattering with Evie, bickering with her sister. I just want to be away from all this. I want to be in my bed. I get pretty ornery when it’s past my bedtime.
We finally make it to the register. Saoirse darts off to use the bathroom. Ula watches after her, then asks if she can go, too. I nod, telling her I’ll meet up with her once we’ve paid. I at least know better than to let her try to find our car in the parking lot.
We finish paying and I head for the loos, passing Saoirse on her way back.
“Where’s Ula?” I ask. Saoirse shrugs.
“She must be in the bathroom still.”
“Did you see her in there?”
I try not to worry. Saoirse heads for the car. I head for the bathroom. No Ula. I run out to the parking lot where Bob and the other two kids are loading up the car. “Do you have Ula?” I shout over the cars, not caring who can hear me. They shake their heads no. I run back into the store.
And I see it all so clearly, too late: why she wasn’t letting go of that cart. The more tired she gets, the less she can see. I was so cross with her, when what I should have done is ask Saoirse or Bob to take the cart so I could just hold her hand while we walked through the store. And if she was too tired to walk through the store on her own, how could I have let her go to the bathroom by herself?
I try to stay calm. She can’t see right now, I tell myself. But she’s smart. She’s fucking smart. She’ll do two things. First, she’ll try to trace her path back to where she started. If that doesn’t work, she find an adult. She’ll ask someone to call me over the PA system.
But it doesn’t stop the burning behind my eyes. It doesn’t stop the sudden darkness of the world from closing in around my own vision. It doesn’t stop me from hating myself, re-playing what a jerk I’ve been to my kid for the last two days. “Let her advocate for herself?” Stop letting her disabilities be my identity? What about the fact that the kid can’t friggen see? How much more fun could she have had at Circus camp if I’d taken five minutes with the instructor and talked to him about Ula? Why did I insist on not interfering when she needed me?
More importantly, WHERE IS MY BABY?!?
I make it back to the register where we were standing when she walked away. And Ula is standing there, looking the most confused I’ve ever seen her. I wave my arms wildly so she notices me coming back in through the automatic doors. I call her name. The panic leaves her face, but she doesn’t move. She lets me come to her. The look on her face is one I’ve never seen before. Her eyes seem lost, but her lips are trying to smile. She’s trying to laugh through her fear.
“Can you believe I could get lost going to the bathroom?” She pulls her lips back past her teeth to force a smile, then. pushes her chest into a giggle. I pull her to me and clutch her close. Her arms grip tightly around my waist. And suddenly, I feel intense pain shoot through me. It isn’t my own. It’s hers.
She wants her independence as much as I want it for her. And in this moment, she is defeated. I quickly wipe my own eyes before she pulls away, trying to take her lead. I shrug my shoulders and push out my own giggle. “Well, I thought you’d see the sign, but I guess it’s pretty high up.”
“I ran around the whole store,” she confesses. “And it’s funny, really. I mean, I still have to pee, and I’m going around the outside of the whole store, trying to find a stupid bathroom, and I can’t find it, and then I can’t find you either! It’s just….just..stupid.” That last word comes out with a blend of giggle and sob.
I lead her back to the restrooms before walking her to the car, gob-smacked all the while by my child’s powerlessness in this world. Learning to read was such a comparatively simple thing, I’m suddenly realizing. Learning to read happens in the safety of our home, with me nearby. Learning to be alone in the world with unpredictable vision is an entirely different matter. Where are her defenses? Where are her protection mechanisms?
We drive to the parking lot where the bus is due in. It’s dark. Saoirse and Ula unravel a giant banner they’ve made to welcome Martina. The tour bus pulls into the lot and I hear Saoirse arguing with her sister. Saoirse’s half of the sign if facing the bus. Ula doesn’t even see the monstrous vehicle. Her half is pointed toward a field. Bob steers her back to face the right direction. I try to pull my attention away from all that just transpired with my daughter and focus on the moment at hand: this new stranger who is about to enter our lives.
Martina finds us in the dark. She bounces toward us and puts her arms around me, pushing all American hand-shaking formalities aside. She pulls away briefly, and the banner has fallen. Ula has tossed it aside. She runs to Martina and throws her arms around her and grips her as though she’s waited years for this young woman to cross the ocean to find her. She welcomes this stranger with a wide open heart, putting love first, disregarding the notion of awkwardness as completely ineffectual. My trepidation about welcoming this foreigner into my home vanishes. Ula can’t see to find the bathroom, but she can see a person’s heart. Martina will do just fine with us.
I stand back and watch and breathe. There is so much this child and I need to learn. I need to learn that I can be wrong about her needs every moment of every day. Mama may know best, but that doesn’t mean Mama knows. Ula needs to learn strategies for navigating new places. She needs strategies for navigating familiar places when fatigue makes her sight grow dim. But here, as I see these little arms embracing a foreigner, I remember once more her most powerful tool. What Ula cannot see with her eyes she can see with her heart, faster than any of us can. And until someone can teach us the next steps, that will have to lead the way.