I divide her body into files. Her kidneys get a file. We track their dilation annually with the ghostly white images of ultrasounds.
Her brain gets a file: in it, the MRI report, describing a thinning corpus callosum, the reason for her wobbly balance. Also, her first ER visit, caused by a five-minute grand mal seizure. Nine months old, and the culprit of the seizure? Her first tooth.
(On the subject of teething, other parents complain about fussiness. We recall neurologists’ rounds, hospital food, epilepsy videos….)
Her spine gets a file. It details the scoliosis I spotted on the changing table when her wiggly body was just two weeks old. The degree of her curve. The asymmetry of her vertebrae. It’s all in the file.
And her genes get a file. The detailed analysis of her chromosomes. The word ABNORMAL up top. The number of genes missing: 120.
Who needs 120?
That’s me, spinning the story with a question, inducing the shrug and the answer, Not us! We don’t need 120! Ra-ra, sis-boom-bah. But I return to the files, sift through, divide, and those papers refuse to spin with me. They are matter-of-fact. Hypotonia. Hydronephrosis. 93% likely to have seizures of some kind.
Ten folders now contain the medical history of my almost-three-year-old. Ten folders monitor the way a body differs when 120 genes go missing. Ten yellow folders hang in the filing cabinet with our bank statements and our taxes.
Here’s the stunner to me. At the very bottom of the pile, I found her first medical record.
Her post-birth physical exam. Over and over, the word normal. Hips: normal. Heart: normal. As factual as the opposite reads on any other form.
There it is. Almost breathtaking. They scanned her newborn body and found nothing of note. This is the baseline. This is the starting point before the story even began. This body free from worrisome labels, free from a calendar of follow-ups.
Do you know how Fiona was diagnosed with Wolf-Hirschhorn Syndrome? Because when she was six weeks old, I wrote a short memoir about life with a newborn, about the nursing difficulties and her incredibly small size. After finishing that piece I thought about publishing it, but I realized that if I were reading a novel, I would have been reading the beginning, not the end. Why was the baby so small?
I gulped, changed doctors, sought answers, wishing at the time that this were a story to read, rather than one to live.
Now we have mounds of papers: blood tests, developmental goals, special education laws, respite care approval, insurance claims, x-rays. This is the new ground of our lives.
But somewhere beneath that ground is a deeper one. A declaration. The first form before all the other forms. Like the word before all other words. Before milestones were missed. Before heart murmurs were found. I have proof. We came from normal. “Look, Fi,” I said today, and kissed her on the head, the paper in my hand.