I won’t sugarcoat my reality. No one on this planet loves my child more than I do, and no one feels the sting of his actions more than me. He can pull my hair, sometimes grabbing it in clumps, and he kicks, punches, and throws himself at me with reckless abandon, pushing my muscles to their limits and leaving me covered in bruises. But the most agonizing thing he does is bite me.
The physical pain is undeniable. I bear scars that I don’t wear with pride; instead, they serve as reminders of my emotional turmoil. There have been times I’ve considered shaving my head because of how he yanks at my hair, ruining what was once a “good hair day” and filling me with fear about how he might hurt someone else and how they might react.
My child doesn’t intend to hurt anyone. He doesn’t even realize that he’s causing pain.
While I feel the immediate physical hurt, a deeper emotional pain lurks within me—an unspoken struggle that many parents endure in silence. My heart tells me, “This is my baby, and I know he doesn’t mean it,” while my mind counters, “No one should have to live like this.”
He wasn’t always like this. Once, he was sweet, affectionate, and truly the cutest little angel. When he began to change, I sometimes doubted whether he recognized us as his parents. Friends would insist he knew, but I wanted to believe otherwise. If he did understand, why would he treat us this way? I started to dread each new day, unable to shower him with the love and attention he needed because any closeness risked inflicting pain on myself.
My partner couldn’t handle it. He said, “You need to stop.” He placed the blame on me for holding and hugging him, claiming that my affection only seemed to provoke more hurt. My heart shattered as I felt forced into a caregiver role, unable to be the nurturing mother I longed to be.
Feeling so detached, people praised me for being a wonderful mom. Inside, I felt like an imposter. Yes, I made the calls for help. Yes, I fought for services. I brought him to specialists and committed to therapy, but my heart felt distant, staring at the shell of my son, unsure of whether the real him was still inside.
Regression took my son away from me, or perhaps it revealed the harsh reality of living with Phelan-McDermid Syndrome (PMS) and the life we must lead. Unfortunately, with regression in PMS, the likelihood of experiencing it again is high. So, while we might be in a phase of progress, there’s always the fear of losing ground.
I often find myself disappointed in my role as a mother. I’m still healing from both physical and emotional wounds. I dread the thought of spending my life in constant defense around my child. I don’t want to be afraid of him. I don’t want to feel foolish for letting my guard down, only to be bitten while trying to show him affection. My love for him is immense, yet I feel trapped by it. You might think, “Of course, you love your child!” But I can assure you, it’s not that simple.
I feel ensnared because I will never abandon him. However, the toll it takes is significant. The mental and physical exhaustion of being with someone who repeatedly causes me pain is overwhelming. It strains my marriage and breaks my daughter’s heart. At times, I feel like I must detach from my own life to maintain my sanity.
I worry deeply about his future. The thought of him hurting someone who doesn’t have the patience or love to understand his condition haunts me, keeping me awake at night. His severe cognitive impairment means that he cannot grasp the concept of pain. How could he comprehend the pain he causes to me or others? I live in fear that someone will hurt or even abuse him—this is a terrifying reality for many individuals with cognitive impairments and even for those without.
Here we are, nine months of everyone being at home together. When he pulls my hair or bites me again, I think of another mother out there facing the same struggles. She loves her child, and her child hurts her. She’s scared yet remains strong, exhausted yet persevering. I think of her often, wondering if she’s someone I might know, but she is silent, never revealing her truth. I understand the dread of yet another diaper change or another bruise from a child who didn’t intend to hurt her but did. I know she exists because I am her.
I have no choice—this is my life.