I won’t sugarcoat the reality of my situation. There’s no one in this world who loves my son more than I do, and yet, no one else feels the pain he inflicts on me as deeply as I do. He yanks my hair, sometimes pulling out clumps. He kicks, punches, and throws himself against me, pushing my muscles to their limits and leaving me with bruises. Yet, what causes me the most anguish — both physically and emotionally — is when he bites me.
The physical pain is undeniable. I bear scars that I don’t flaunt with pride; instead, they weigh heavily on my heart. There have been moments when I’ve considered shaving my head, as he often grabs my hair, ruining what might have been a good hair day, but more importantly, it terrifies me to think about him harming someone else and how they might react.
My son doesn’t hurt anyone intentionally. He’s completely unaware of the pain he causes.
While I experience the obvious pain, there’s a deeper emotional ache that I know many others endure in silence. It’s the struggle between the heart that says, “This is my beloved child; he didn’t mean it,” and the brain that retorts, “No one should have to endure this.”
He wasn’t always this way. There was a time when he was sweet, loving, and genuinely the most adorable little angel. During his most challenging moments, I often felt he didn’t even recognize us as his parents. People would insist he knew, but I wanted to believe he didn’t. If he did, why would he treat us this way? I started to dread the daily responsibility of caring for someone I could no longer shower with love because getting too close resulted in physical pain.
My partner couldn’t handle it anymore. He advised, “You need to stop.” He blamed me for holding him and trying to show affection while this little boy continued to hurt me. My heart shattered as I realized I was relegated to a caregiver role rather than being allowed to be his mother.
In this state of detachment, people praised my parenting, but I felt like a fraud. Yes, I made the necessary calls. Yes, I fought for services and took him to necessary appointments for therapy. Still, I felt emotionally distant, looking at a shell of my son, unsure if he was even truly present.
Regression stole my son from me, or perhaps it revealed the reality of what Phelan-McDermid Syndrome (PMS) truly entails, and that this is the life we must navigate. However, with regression in PMS comes a high likelihood of reoccurrence, and as we experience a moment of progress, the fear of losing it again looms large.
I often feel disappointed in myself as a mother. The physical and mental wounds have taken their toll, and I still carry that hurt. I don’t want to spend my life on guard around my own child. I don’t want to fear him. I don’t want to feel foolish every time I let my guard down just to be bitten when I offer a hug. My love for him is immense, yet I feel trapped by it. You might think, “Of course you love your child!” But if only it were that simple.
I feel confined by my unwavering commitment to him. Still, the toll it takes is immense. The mental and physical fatigue of being around someone who repeatedly hurts me is draining, impacting my relationship and affecting my daughter, who witnesses it. I sometimes feel that detaching from my own life is the only way to maintain my sanity.
I’m deeply concerned about his future. The thought of him hurting someone who lacks the patience and understanding to accept this aspect of caring for him fills me with dread. The reality is that, due to his severe cognitive impairment, he cannot comprehend pain—mine or anyone else’s. I fear that someone might hurt, abuse, or even kill him; this is a terrifying truth that happens to many, including those with typical development.
Here we are, nine months into a 24/7 lockdown. Each time he pulls my hair or bites me, I think of other mothers facing the same struggles. They love their children, yet they too are hurt. They feel scared but remain resilient. They are exhausted but persevere. They are kind, even when they have every reason to be angry at the world. I think of this silent warrior, wondering if I might know her; yet she may never reveal her truth. She dreads changing yet another diaper and worries about the next injury inflicted by a child who didn’t intend to cause harm. I know she exists—because I am her.
There’s no escaping this; it is my life.
For more insights into navigating these challenging experiences, check out this related blog post on home insemination. If you’re seeking expert guidance, Make a Mom provides valuable resources for couples on their fertility journey. Additionally, the Mayo Clinic offers excellent information regarding pregnancy and home insemination.
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Summary:
This heartfelt reflection explores the struggles of a mother dealing with the physical and emotional pain inflicted by her son, who has Phelan-McDermid Syndrome. Despite the deep love she has for him, she grapples with feelings of fear, frustration, and disappointment as she navigates the complexities of parenting a child who unintentionally harms her and others. The piece highlights the challenges of maintaining emotional connection while managing the reality of aggression and detachment, ultimately revealing the silent struggles many parents face.
Keyphrase: Parenting a child with Phelan-McDermid Syndrome
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