I Was Told My Daughter's Abilities Would Limit Her. Then She Wrote a Poem With Her Eyes.

Nobody knew where the brochure came from. It simply appeared in the recycling bin next to my desk, plucked from its fate by my older daughter, RoRo. She had found me chopping vegetables at the kitchen sink and waved the paper in my face. “Look at this poetry contest, Mom. There are prizes! Can I enter it?”

 “Sure. But let’s include your sister too, okay?” I watched as she scampered up the stairs to begin writing.

Unlike RoRo, my youngest daugther, JJ, could not scamper away and compose in the solitude of her bedroom. It had been years since she had scampered anywhere. Rett Syndrome—a rare and progressive disorder—had robbed her of that, along with the ability to speak, use her hands, and eat anything but softs foods. Instead, JJ depends on a feeding tube for nutrition and on an eye-gaze device for communication. Often, it feels like she has more restrictions than freedoms.

The idea of “no limits” is thrown around in the world of disability parenting as often as it is in the typical one. However, deep down, I think most of us realize what a ridiculous notion a truly limitless existence is. For every person on this planet, there are things they cannot and will not manage to achieve. I am a 5’4” woman in my forties. I will never play basketball in the WNBA. RoRo loves astronomy but she will never set foot on Neptune. JJ, with her lack of hand and body control, will never become a concert pianist—at least not in the traditional sense.

Yet, it’s this at least that has us pushing our children to reach for the metaphorical stars. Because if someday JJ receives a gene therapy—a treatment already in clinical trials for Rett—she might regain enough hand function to hit a few piano keys. Or she might learn to play by using her speech device. Or AI might develop a way to translate the music in her head onto a screen. Though some goals are out of the question, many aren’t impossible. They simply involve a very, very long stretch.

It was certainly a stretch for JJ to write her own poem. Like nearly everything in her life, it meant a lot of hard work. First, she watched YouTube videos that explained the steps involved in writing poetry. Then, I created a list of yes/no questions—her fastest mode of communication—to narrow down her desired topic and poem structure. Then she went line by painstaking line, typing out her ideas by using the movement of her eyes to push buttons on her speech device.

Like her, the poem JJ wrote was creative, entertaining, and goofy, though the end result was quite poignant. Small purple aliens visited her school and JJ acted as their guide. Together, she and the aliens—both different in their own ways—ended up celebrating their differences. She tried their food, and they tried hers. She used her device to communicate in their common language. They applauded as she showed off her physical therapy equipment. In the end, she joined them on their planet where everyone had a dance party. (To read the poem in full click here).

When JJ was two and received her diagnosis, I never imagined she would write poetry. Instead, a genetic counselor told me my daughter would be intellectually disabled. The woman’s firm tone brooked no argument, so I believed her. But it didn’t take long to learn just how wrong she was. While researching Rett, I stumbled on a lab administering IQ tests using eye-gaze technology. The researchers discovered that many subjects with Rett were capable of keeping up with, if not surpassing, their peers. And once I connected with other Rett families and saw what their children could do with their devices, it only reinforced the lab’s findings.

JJ was five when we got her an eye-gaze device. She worked her way up from four buttons per page to the maximum number of eighty-four. Eventually, she was teaching herself to read, count, and spell out words and phrases with the device’s keyboard.

From my daughter I have learned that exceeding limits has less to do with miracles and more to do with hard work and ignoring the people who predict others’ capabilities. I am not saying we ignore reality, but we should listen to our sons and daughters—and to them alone—when it comes to what they can and cannot do.

Once we know what they are capable of, we also need to let the world know about it. One of the best parts of pushing past expectations is the ripple effect it has. Were it not for the girls who came before her, neither JJ nor I would have thought she could write poetry. But we both knew about a girl with Rett who used her device to write a book and another who sold merchandise based on the bold, colorful designs she drew with her eyes.

Now it is my turn. I am sharing the story of my little girl and her purple aliens because I want people to know what she has achieved. Using only her eyes, my daughter composed a nineteen-line poem that was chosen by judges as worthy of publication in the contest’s poetry anthology.

JJ might not be able to accomplish everything, but she is capable of so much more than what the world expects of her. My child can do beautiful, breath-taking, barely possible things. And so, I suspect, can most people—as long as we let them discover for themselves where their limits lie.