In the years since my daughter’s medical mystery was solved, I’ve struggled to silence the what-if voices that whisper to me in quiet moments. What if we’d figured this all out when she was two? What if we’d figured it out when she was four? What if we’d figured it out at five? What if her care had been managed by a multi-disciplinary team from the very beginning?
These what-ifs serve no purpose. They don’t change anything about the moment I inhabit right now, a moment in which Sammi, my resilient, remarkable kid is currently riding an enormous horse with her best friend after gobbling pizza with her last night and sharing pancakes with her this morning. Her legs fill in her jeans, her cheeks are full and bright and sun-kissed, and I am truly, honestly, not worried about her. The what-ifs can’t touch that. They can’t touch her future.
Still, they smack my past around like a cat with a mouse. I wonder how the clinginess might have been, the sleeplessness, the tantrums. I wonder how the slow reading might have gone, the pigeon-toed walk, the texture issues with food and fabric. Maybe they would have been no different with accurate, correct treatment. Maybe she’d be a totally different person. There’s just absolutely no way to know.
I wrote the piece below for Role Reboot Magazine because we’re not supposed to look backward. We’re not supposed to engage with the what-ifs. Role Reboot is a magazine about life off-script, against the grain, mucking with the status quo. It was a difficult one to write, but also cathartic. Role Reboot covers a huge swath of topics, and it’s very easy to slide down the rabbit hole of reading one essay after another there. It’s definitely worth a nice long browse.
excerpt from These Are the Things I Will Never Know
originally published in Role Reboot Magazine
…I read to Sammi, as I had to her sister, all the time. We sat together, the three of us, as my finger pointed at the words, and I lent voices to characters and described the pictures. Her sister became a voracious reader. She did not.
Her intelligence seemed just as keen as her sister’s; she navigated the world easily, identified colors and sang songs from memory, but she did not read. She squeaked along in school just at or just under grade level, her frustration with decoding letters into words and words into sentences reaching an explosive level, mediated only slightly with each year of maturity.
I wondered if her inability to eat well was affecting her ability to concentrate. Myriad gastrointestinal issues had kept her from eating more than a few bites of food at a time for years, a schedule not easy to manage during the school day. I knew she was always under-fueled. Could this be keeping her from staying on task with reading?
Her teachers said no. They said she was fine, that some students take to reading later, that she was not flagged for reading specialist support.
However, after a second cardiac surgery at age 8—to free her aorta, curling itself into her esophageal walls—finally gave her the ability to eat well and quickly, her reading abilities jumped several levels in a matter of months. Chapter books and series began to fill the shelves beside her bed. I need the next one, Mommy became a common phrase.
Does that mean that her teachers were wrong? Did she need the better nutrition for her brain to accommodate the reading her grade level dictated, or is this a coincidence of that magical developmental step they said she’d take when she was ready?
I will never know.