I won’t sugarcoat my reality. No one loves my child more than I do, and no one feels the hurt caused by him quite like I do. He pulls my hair — sometimes yanking it in clumps. He kicks and punches, often throwing his body against me, pushing my muscles to their limits and leaving me covered in bruises. But the most painful act he commits is when he bites me.
The physical pain is undeniable. I carry scars that I don’t display with pride; instead, they weigh heavily on my heart, accompanied by a sense of shame. I have contemplated shaving my head countless times. It feels foolish when he grabs my hair, not just ruining what was once a “good hair day,” but also frightening me with the thought of him hurting someone else and how they might react.
My child doesn’t hurt others intentionally. He’s often oblivious to the pain he inflicts.
While I feel the obvious physical pain, there’s a deeper emotional hurt that many others endure in silence. My heart tells me, “This is my baby whom I love; I know he doesn’t mean it,” while my mind counters, “No one should have to live this way.”
He wasn’t always like this. He used to be sweet, loving, and truly the cutest little angel. At his worst, I sometimes felt he didn’t recognize us as his parents. Others would insist he did, but I wanted to believe otherwise. If he truly understood, why would he treat us this way? I began to dread caring for someone I couldn’t shower with affection like I once did, fearful that getting too close would lead to physical pain.
My partner couldn’t handle the situation. He said, “You need to stop.” He placed blame on me for holding him and embracing him, arguing that my efforts to shower him with love only resulted in more hurt. My heart shattered as I felt compelled to step back from my role as a nurturing mother and instead became merely a caregiver.
With this emotional detachment, people would compliment me on being a wonderful mother, but I felt like a fraud. Yes, I made the calls for help. Yes, I advocated for services. I took him to specialists and engaged in therapy. Still, my heart felt distant as I looked at the shell of my son, uncertain if he was still inside.
Regression stole my son from me, or perhaps it revealed the true nature of Phelan-McDermid Syndrome (PMS) and the life we now lead. However, with regression in PMS, the likelihood of it recurring is significant. So, even as we experience progress, there’s always the fear of losing it again.
Mostly, I’ve felt disappointed in myself as a mother. The physical and mental wounds linger, and I don’t want to spend my life on guard around my child. I don’t want to live in fear of him. I don’t want to feel foolish every time I let my guard down for a hug or a kiss, only to be bitten. Yet, my love for him runs deep, and therein lies my entrapment.
I’m sure some will think, “Of course, you love your child!” But I wish it were that simple.
I am ensnared by my commitment to never give up on him, yet there’s a toll. The mental and physical exhaustion from constantly being hurt can be overwhelming. It strains my marriage, and it breaks my daughter’s heart to witness it. At times, I feel the need to detach from my own life just to survive and maintain my sanity.
I worry for his future. The thought of him biting, pulling, or hurting someone who lacks the understanding and patience to accept his condition is terrifying. Part of his severe cognitive impairment means he cannot comprehend pain, let alone mine or yours. I dread the possibility that someone might hurt, abuse, or even kill him — this fear is my living nightmare.
Here we are, nine months into a period of everyone being home. When he pulls my hair or bites me again, I think of another mother somewhere enduring the same struggles. She loves her child, but her child inflicts pain. She’s scared yet remains strong. She’s weary but forges ahead, kind to others despite having every reason to be angry. I think of her, and I wonder if I know her, though she remains silent about her truth. I know she dreads changing another diaper and braces for the next fat lip 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.
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Summary:
In this heartfelt account, Maria Thompson shares the emotional and physical challenges of parenting a child with Phelan-McDermid Syndrome. Despite the deep love she feels for her son, she grapples with the pain he unintentionally inflicts and the fear for his future. Her journey reflects the struggles many parents face in similar situations, highlighting the isolation and heartache that come with their experiences.