They said I was a monster.
I saw the whispers ripple through the playground, felt the prickle of their stares in the grocery aisle. She’s always on her phone. She looks like she hasn’t slept in a year. Poor kid, no wonder he’s so quiet. My heart would clench, a cold, hard knot of pain forming deep inside me. I wanted to scream, to lash out, to grab them by their shoulders and shake the ignorance from their eyes. But I never did. I just smiled, a brittle, strained thing, and walked away, pulling my small one a little closer.
It started subtly. After he was born, I stopped going to the mommy-and-me groups. I missed the coffee mornings, the park playdates. My appearance, once meticulous, became an afterthought. My clothes were often wrinkled, my hair a messy bun, my eyes perpetually shadowed. People started noticing. She’s letting herself go. Being a mom really changed her. Harmless enough, at first. But then came the harder looks, the whispers that turned into hushed conversations when I passed.
I heard it all. Through half-open doors at family gatherings. In the school hallway. She’s neglecting him. She’s too busy with her own life. What kind of mother is always so… absent? Absent. That word, it burned. I was never absent. I was just absent from their expectations. My nights were a blur of hushed movements and urgent needs. My days, a frantic sprint between appointments and the crushing weight of a secret only I carried.
Patrick Swayze with his wife, Lisa Niemi, circa 1987 in New York. | Source: Getty Images
Every time I missed a school fundraiser, every time I couldn’t stay for the parent-teacher meeting because I had to “be somewhere,” the judgment solidified. It was a concrete wall built around me, brick by brick, by every knowing glance, every sympathetic sigh. My own family, even. My mother once took me aside, her voice laced with concern, “Are you coping, dear? You look so tired. Is everything alright with… him?” I just nodded, a tight, false smile plastered on my face. No, Mom. Nothing is alright. Nothing has been alright since he turned six months old.
I knew what they thought when they saw me rushing out of the house, looking disheveled, sometimes even wiping tears from my eyes. They thought I was selfish. They thought I was running to escape my responsibilities. They thought I was a bad mother. And every single one of those assumptions ripped a fresh wound in my already bleeding heart.
There was one afternoon, I remember it vividly. I was at the park, my son playing quietly on the swings, lost in his own world. A group of mothers, their voices bright and airy, were chatting nearby. One of them pointed at me. I saw it. The finger. The quick turn of heads. Then I heard it. “She’s so cold. Never smiles. Honestly, I sometimes wonder if she even wants him.” The words hit me like a physical blow, stealing the air from my lungs. My vision blurred. I wanted to stand up, to turn around, to scream at them: YOU HAVE NO IDEA! YOU HAVE NO IDEA WHAT I LIVE WITH EVERY SINGLE DAY! But I didn’t. I just stood there, rooted to the spot, feeling the hot tears prick my eyes. Oh god, I’m a terrible actress. They can see me breaking.
That night, alone in the quiet darkness of his room, I finally let myself shatter. I sat by his bed, watching his small, frail chest rise and fall, so gently, so precariously. My beautiful boy. My brave, silent warrior. My hand reached out, gently tracing the barely visible scar that snaked across his tiny scalp, hidden by his soft hair. He stirred, letting out a soft whimper. I stroked his forehead, whispering reassurances, knowing he wouldn’t understand the depth of my despair.
Patrick Swayze and Lisa Niemi at the Academy Awards on April 11, 1988, in Los Angeles, California. | Source: Getty Images
He had been diagnosed with a rare, aggressive neurological condition when he was just six months old. It was a death sentence. Or, at least, that’s what the first doctors told us. They said he wouldn’t live past two. They said he would never walk, never talk, never truly be aware. But I refused to accept it. REFUSED. Every frantic rush, every missed event, every weary night, every moment of my supposed “absence” was a desperate search for a miracle. For a new trial. For a specialized doctor on the other side of the country. For a tiny sliver of hope.
The exhaustion wasn’t from staying up late watching TV. It was from monitoring his breathing, administering complex medications, learning to do physical therapy he hated, reading medical journals until my eyes burned, and making frantic phone calls to insurance companies. My dishevelled appearance? From sleeping in waiting rooms, from crying myself to sleep, from simply not having the energy for anything but keeping him alive, keeping him comfortable.
The reason he was so quiet? Not because I neglected him, but because the condition was slowly stealing his ability to communicate, to interact, to be a typical child. He lived in his own gentle world, and my life became about protecting that world, fighting for every single precious breath, every fleeting moment of awareness.
He made it past two. He made it past three. But the condition, it never stopped taking. It’s still taking. And I’m still fighting, alone, with the whispers of judgment as my constant companion.
Now, as I sit here, finally telling this story that no one else has ever heard, I look at him sleeping soundly in the next room. He’s almost five. He can’t run and play like the other children. He needs round-the-clock care. He may never say “Mommy” again.
Patrick Swayze circa 1990. | Source: Getty Images
And the hardest part? The most heartbreaking, crushing truth?
Every single one of their assumptions about my selfish, absent motherhood… I let them believe. I let them judge me, because the alternative was telling them the truth. And the truth, that my beautiful, innocent boy was slowly fading away, was a burden too heavy to share. It was a secret I kept to protect his last shred of dignity, and to protect myself from the pity, the sad looks, the constant reminders of what he was losing.
And he still doesn’t know. He doesn’t know his days are numbered. And I will keep letting them judge me, every single day, if it means he gets to live his remaining time enveloped only in my fierce, silent, heartbreaking love.
