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What, What Will We Do?

This creative non-fiction essay won first prize in the Memoir/Inspirational category of the Kansas Authors Club state-wide writing contest. It recounts events in my family's life that took place during the year 2020-2021.

In January of 2020, my two-year-old daughter, JJ, received her diagnosis. When we returned home from the doctor, my hands shook and my lashes blinked furiously under the threat of unshed tears. My oldest daughter, RoRo, studied me with concern. We knew she needed to know why Mommy was so upset. But how do you explain neurological disorders, developmental delays, and behavioral disturbances to a five-year-old?

“JJ’s brain is different,” we told RoRo. “Her body is not like ours.”

One month later, my husband and I waved to RoRo in the back of her grandparent’s car, our eyes skittering away from the bald patch that had recently materialized on the top of her head. Perhaps a little time at the family farm would still her worried, plucking fingers. Maybe some quiet afternoons lying underneath the rustling pine trees would erase the sound of her younger sister’s bloodcurdling meltdowns.

It was eight weeks before we saw our oldest daughter again. When we pulled into the driveway of the farm, RoRo greeted us, eyes alight with hope, hair thick and glossy once again. Since we had last seen her, an in-home therapist had been secured for JJ. Health insurance had been sorted. A global pandemic had begun. All that was left of my job was a letter on my supervisor’s desk. But none of that mattered to RoRo. It was April Fool’s Day, but this was no joke. Her parents had finally come for her.

The four of us made the three-hour drive home together. JJ’s hands, crisscrossed with bites and bruises, were an ominous presence in the car—a hair-trigger bomb always on the verge of detonation. From the front seat, there wasn’t much we could do to stave off the inevitable explosion of anger. Instead, it was up to RoRo to keep her sister calm. From her perch in the backseat, she handed over toys, snacks, and plastic bags to crinkle. Thanks to RoRo, JJ made it home unscathed.

After their reunion, it took time for the girls to interact with one another. At first, JJ was too busy crouching in a corner and fingering shiny strings of beads to notice her sister dancing, singing, and flitting around her. Then one hot August afternoon, with the help of her therapist and a set of leg braces, JJ took her first lurching steps across our back patio. Sometime between the sweltering cicada-filled days of summer and the first frost of autumn, she learned to walk unaided. She awoke to a new world that fall, and it was one that finally included her sister. JJ lost interest in the beads and, instead, began laughing when RoRo clucked like a chicken or made silly faces at her. She learned to say bed and asked to be lifted onto the mattress next to her sister. The girls would lie side by side on the patterned quilt—JJ rhythmically snapping her fingers and RoRo glued to a baking show on our tablet.

A few weeks after JJ took her first steps, RoRo and I began kindergarten homeschooling at a small plastic table crowded into the corner of the kitchen. RoRo had taught herself to read during those long quiet afternoons on the farm, so I decided to teach her math instead. From me, RoRo learned what a million was. “I love JJ a million times a million,” she told me afterward. Next, she learned what a billion was. “I love JJ a billion times a billion,” she concluded.

Then I taught her about infinity.

When she wasn’t doing her schoolwork, RoRo still spent much of her time at the kindergarten table, puttering among her art supplies, making gifts she hoped would be useful. When JJ was learning to identify different types of animals for her therapy, RoRo made her a paper horse. When we discovered that JJ loved the feeling of air on her face, RoRo folded her a special paper fan. When JJ spent her third birthday awaiting brain surgery, RoRo wrapped up a pile of crinkly streamers and ribbons and sent them along to the hospital. JJ spent hours playing with her sister’s gift, her tiny arms hooked to a sea of snaking wires. RoRo made countless other things throughout the year, each so bizarre and heartfelt we found it nearly impossible to throw them away. Our house became a mecca of plastic cup inventions, miniature clay sculptures, crayon-scribbled pictures, riddles, decorations, jokes, and games.

Though a large portion of the gifts were meant for JJ, many were also meant for me. RoRo now guarded my happiness with care because I was not only mother and teacher to her. I was also a surrogate sister. Through me, RoRo had begun speaking to JJ, telling her about school lessons, books, and life on the farm. By winter JJ had a handful of words—go, done, cup, eat—but it still wasn’t enough for a conversation. So I spoke back as if I were my youngest daughter, feigning ignorance, asking questions, and telling RoRo what a big, strong, helpful girl she was. It was bizarre and disorienting, but I didn’t mind. It was my gift to her in return.

Despite the progress JJ was making, her frustrated screams and explosive meltdowns were still a large part of our lives. One dark icy night tucked into the tail end of winter, JJ was wailing again, this time in her high chair. I was hovering over her, modeling calming breaths, trying desperately to understand why my daughter’s brain refused to release the words it so clearly needed me to hear. I watched as her face turned red with frustration and she came one step closer to using her teeth to write her thoughts across her skin instead.

As I hovered and fretted, RoRo brought me a series of brightly colored construction paper notes to cheer me up.

I read the yellow one first.

What, what will JJ be?

I turned it over and found the answer.

JJ will be happy soon.

Then there was the green note.

What, what will JJ do?

Another flip of the paper.

JJ will talk soon.

The one written on my favorite shade of blue posed a last and final question.

What, what will we do?

I caught my breath because this was it—the question that kept me up at night, holding me in its grip during those silent gray hours before dawn. The question that cycled on repeat in my mind every day as I jogged through our neighborhood, running away from everything and toward nothing in particular. The question that, despite its prominence in our lives, never seemed to have an answer.

I flipped the paper over and read what RoRo had written there.

We will watch TV soon.

“Good idea,” I told her. “Let’s do it.”

As heart-rending wails finally melted into hiccupping little sobs, I pulled JJ out of the high chair and got her ready for bed. After I tucked her into her crib under her favorite weighted blanket, I pulled my oldest daughter close to me in the low light of the television. We laughed together, but quietly, so as not to disturb JJ’s delicate web of dreams. Burrowed together on the couch, RoRo and I watched imperfect bakers make imperfect things in the midst of our very, very imperfect new life.

Little more than a year after the doctors told us about JJ’s brain and body, the past lay behind us in a cloud of dust, but the future was still nothing but a tiny dot on our horizon. The present was all we had, and all it held were questions. What, what will we do? was the one that preoccupied me by far the most but was also the most useless. It hit me that night, as I snuggled closer to my oldest daughter, that I had spent the last twelve months asking myself the wrong question entirely. It was RoRo who, over the course of the past year, had been slowly and quietly chipping away at the right question instead.

We all have JJs in our lives—those people who are as important and necessary to us as our breath or limbs or beating hearts but who remain a complete mystery. We can’t change or predict them. Often, we cannot even understand them. The question we should ask ourselves, then, is this: How do we love these people anyway, just as they are, just as they deserve to be loved? For RoRo—whose role on the sidelines has always given her the best view—the answer is both simple and perfectly clear.

We love them like a sister.

3 comentários

17 de nov. de 2022

Remarkably insightful. Complete. A beacon for others along such a difficult path.

Frank J.


16 de nov. de 2022

Claire, you are an amazing writer! I love reading your essays, and think you are a wonderful mother to both of your daughters. I will continue to hope for a cure for your younger daughter. In the meantime, keep writing!


16 de nov. de 2022
Respondendo a

Appreciate it, Nancy. Thanks for reading!

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