The word snuck out of his plump lips—“Sh … shh … shhh … shoe!”, followed by a more confident “Sock!”, the ending K sharp and resounding. He grinned proudly, blue eyes bright in the morning light, and toddled toward me.
His first words did not surprise me. My son is rarely barefoot, his socks and shoes a constant companion, a beacon that draws attention everywhere we go.
“Wow mom, must have been in a rush this morning—his shoes don’t match!” another mother jokes as he swings next to her child on the playground.
“Um, did you realize he’s wearing two different shoes?” the grocery clerk informs me at checkout.
“Looks like you need more sleep, mom,” the car mechanic intones.
I didn’t realize that what’s on his feet would matter so much to so many.
My son’s left shoe is scuffed and stretched, two sizes bigger than the right, its tongue splayed wide and insides carved out to accommodate his rigid leg brace. It is gray and large, while his right shoe is brown and small.
Perhaps I could buy two pairs of the same shoe, or trade online—I easily found a community for braced children to share shoes. But it does not seem important enough. He doesn’t realize his shoes matter; he doesn’t yet know that he is different.
I noticed when he was just weeks old, naked and squirming on his changing table—the abnormal curve of his left leg, the odd contour of his ankle, the way his left foot didn’t turn out like the right. Then I found the tan irregular birthmarks hiding in the chubby rings of his thighs, the larger ones splayed on his torso like a spilled latte.
As a pediatrician, I knew what these meant; as a mother, I wanted them to be temporary—just poop stains, or an exaggerated intoeing from how he’d curled in my womb. I wiped him with soap and alcohol, I stretched his little leg over and over. But the spots did not wash off. His leg did not straighten. They were the first outward signs of an unexpected inward problem.
A visit to a geneticist confirmed my suspicion—he had neurofibromatosis type 1 (NF1), a genetic disorder I recalled from medical school. I’d made flashcards of its features one afternoon in the library. Tumors—fleshy superficial ones like barnacles, or deeper ones that can become cancerous. Learning disabilities that affect attention, IQ or spatial perception. Scatters of tan birthmarks that give the look of a leopard. Bone deformities that twist the spine or disfigure a leg. I’d stared at the black and white photos on the pages of Smith’s Recognizable Patterns of Human Malformation —patients covered in lumpy tumors, their skin freckled, a leg crooked, their eyes dark with the pleading despair of a captive animal. Never did I think my own child could pose for the textbook.
His mismatched shoes will soon become the least noticed part of him, his body plagued by the deformities his abnormal genes will manifest. Will his fragile leg shatter with the kick of a soccer ball? Will his eyes be blinded by tumors, unable to see the flight of his kite? Will young children run from him, thinking he’s a monster? Will he be laughed at? Will his body grow cancers like mine?
I tried to avoid passing my curse to him. Plagued by my own genetic haunt, I have lived my last dozen years with a rare recurrent cancer. Several surgeries and every-six-month scans have taught me to navigate pain, calm anxiety and cope with uncertainty. I hoped to keep my genes from causing any more suffering. Before conceiving, I had every genetic test possible, looking for lurking syndromes or faulty switches in my DNA. Everything was normal.
However my efforts came to naught. Nature, the stars, fate—they had different plans. Somewhere between sperm meeting egg and his body exiting mine, my son’s genes mutated, giving NF1 its debut in our family tree.
We generally expect our children will be “normal.” As a pediatrician, I know this is in no way guaranteed. I have cared for children with every tragic malady and unforeseen abnormality. I have seen how little we can control—how an accident, a blood test, a CT scan result, an aberrant gene can flip a family’s life upside down.
Somehow I didn’t expect it would happen to my child. It felt different as a mother—the mornings of guilt, the nights of fear, the daily emergence of an even fiercer protective instinct. I didn’t want others to think of him as diseased, abnormal, pathologic. I wanted him to be seen as a beautiful boy, not a medical chart. I wanted to save him from the pokes, prods and pain that I knew would come. I wanted him to have no limits.
We can only predict so much. I can expect certain complications, anticipate certain needs, but I cannot know exactly how my child’s life will unfold. Genes may provide the road, but I do not know how he will drive down it.
We can only protect so much. I can ensure my son sees the right specialists, gets screened to catch problems early and wears his brace. But I can’t stop each pang of pain, deflect each rude stare, block each taunt.
I can help my son laugh off the teases, distract him from the hurt, show him to look beyond the surface. I can walk with him, encouraging him to rock the mismatched shoes that allow him to keep his leg braced and safe. I can show him the beauty in asymmetry and the strength in difference.
I can remind him that each of us is somehow “abnormal.” All of us are embarrassed or uncomfortable about some part of ourselves. None of us is without burdens. Some, like his, are on the surface to announce to all, others are deep and in need of more excavation. In recognizing these burdens, we can find the wellspring of empathy, of acceptance, of care.
My son just learned to walk, and does so with giggles and glee, his braced leg moving nearly in step. I never notice his shoes—just his wide smile, big blue eyes, tufts of golden hair catching the spring sun as he stoops to inspect a pillbug creeping down the sidewalk. I hope he keeps walking with pride, with resilience, and with kindness—no matter what is on his feet.