I am a writer whose subject matter sometimes horrifies people. Yet, there are no guts, weapons, or gore in my essays and stories. My subject matter isn’t assault, violence, war, abuse, incest, torture, or addiction. Instead, I talk about another thing most people can’t help turning away from, one that few want to admit exists.
In my writing, I explore my child’s meaningless suffering.
My youngest daughter, JJ, has a progressive neurodevelopmental disorder called Rett Syndrome. At the age of five, Rett has already stolen her words, the use of her hands, her chew and swallow function, and her ability to walk independently. It has left her with a feeding tube, epilepsy, and a wheelchair. I could go on and on, listing distressing facts about her life: She has undergone two emergency surgeries. She went blind for a year. She was once able to feed herself. She uses her eye-gaze device to tell me that she feels lonely, jealous, and different.
Over time, I have learned that when I write about these things, not many people want to hear it. Instead, readers want to learn about the silver linings in my family’s life. So, more and more often, I have been exploring the positives. How JJ’s disease has made her older sister, RoRo, more empathetic and resilient. How my little girl’s syndrome has made me stronger and more open to difference. How much joy I feel witnessing the boundless love that has sprung up between my two girls.
Not surprisingly, this type of essay does quite well. When I wrote about how JJ’s speech device gave her power and agency in “The Miracle of Language,” it was a finalist in an international contest. When I traced the story of JJ and RoRo’s unique bond, I was a grand prize winner. I won again with an essay describing the beautiful, complex relationship our family has to JJ’s helpers and therapists.
My more informational pieces are often just as well received. My articles published in parenting magazines cover topics like the “Ten Ways to Support Your Special Needs Mom Friend” or “How to Teach Your Child about Disabilities.” People love these articles. Readers share them, leave comments, and compliment me. Thank you so much for raising awareness. You have such a beautiful family. You’re so inspiring.
Yet, there are other, darker parts to our life with JJ that audiences tend to find much less palatable. There was that sweaty August morning I spent leaning over our kitchen sink, trying not to retch, while a neurologist said words over the phone like genetic, progressive, and devastating. There was the day my husband and I combed through the house looking for toys to donate to children who hadn’t gone blind that year. And, of course, there were all the times I held my girl after a seizure laid waste to her tiny body, leaving her limp and clammy and spent.
There is also JJ’s pain itself. Since symptoms of my daughter’s disease have surfaced, there have been many times that her anger, frustration, and physical pain have led her to hurt herself. JJ has pulled out chunks of her hair, bitten her hands and fingers bloody, and banged her head against the sides of her metal wheelchair. As my husband and I struggled to protect her—pulling a plastic swim cap over her head, duct taping gloves to her hands, wrapping the back of her wheelchair in layers of foam—we knew we were living stories no one else wanted to hear.
Readers, editors, publishers, and contest judges only seem to want me to write about my daughter in one particular way. When I shape my stories so that I create meaning from JJ’s disabilities or teach reassuring life lessons, I am successful. It’s when I don’t do this, that my writing becomes a problem. Time and time again, I have failed to find a home for essays, posts, and stories that describe the darker, more senseless side of our lives or the ways in which JJ’s syndrome causes her to struggle.
For parents like me, there is enormous pressure to focus on the parts of our lives that fit neatly into the socially acceptable narrative about children with disabilities. Within this framework, there are certain lessons disability parents are expected to learn—about things like building inner strength and appreciating the beauty of the moment—and a particular range of emotions we are permitted to express.
Only certain negative feelings appear to be palatable to others. No one objects, for example, when I mention my mental exhaustion, sadness, or grief. People don’t even mind if I become angry, just so long as it is in a way that remains admirable and relatable. Usually, this means the times when JJ’s dignity, safety, or rights are endangered. But when I become upset—not at those who threaten my child, but at the unfairness and senselessness of my situation—it makes others shy away. I am no longer making meaning, but unraveling it.
People also do not feel comfortable witnessing my daughter’s full range of emotions or the entire truth about her disease. It is true that JJ often inspires others. She remains happy, brave, and strong in the face of unspeakable difficulties. She loves to play tricks, crack jokes, and cuddle with her favorite people. But other times she is angry. She struggles desperately to talk, then cries in frustration. She uses her speech device to tell me she hates her feeding tube and feels jealous of other children who can use their hands. She screams and complains. Sometimes, she even throws tantrums.
My daughter and I are not the only ones trapped in this social straitjacket. Many parents of medically complex children keep their dark times and their children’s suffering hidden from the outside world. Of course, these people often find ways to be happy and enjoy the good moments in their lives. But they shouldn’t be expected to do these things. They shouldn’t have to erase, hide, or downplay the pain they also experience. They should be allowed to live loudly, fully, freely, and visibly.
As I have written my way through my family’s chaotic and messy existence, I have come to realize how stifling it is to keep half of our life hidden in my essays and stories. Even though ours is a tale most people don’t want to read in its entirety, this doesn’t mean it always has to be told in tiny, palatable bites. So, from time to time, I still write about the darker side of things, despite knowing that my words aren’t likely to find a receptive audience.
Perhaps this tension will never be resolved. Perhaps it will remain yet another in a long line of unsolvable problems created by my daughter’s disease. I might simply need to accept the fact that parts of my life with JJ will read like horror stories to many people. But to me and my family at least, they will always read like something else—our full and honest truth.
Are there parts of your life you hide from others? Why? How do people react when you stop hiding? Let me know in the comments below.