Chapter 1: The Weight of Grief

In the days that have passed, I've come to see the dark marks of bruises on my body. In a twisted way, I find relief in their severity, as if they validate my decision to confine my twenty-two-year-old daughter in her room while I locked myself out, paralyzed by fear. As I peeked through the slight opening in the curtains, I saw her on her bed, donning noise-canceling headphones. Her breath came in heavy gasps, reminiscent of a woman practicing Lamaze; tears streamed down her cheeks. Earlier, we had been discussing her potential move to San Francisco, and in that moment, the weight of reality crashed down on us, reminding me of her urgent need to separate from me and her brother — the silver lining being the acknowledgment that nothing can alter the trajectory of his illness.

I could hear the shattering of frames as they collided with walls or the ground. A sudden crash made me glance through the peephole, and I caught sight of the 75-pound television that had been dismantled and hurled a few feet away. I sensed the chaos enveloping my son, Joey, as my knees trembled, akin to the shaky aftermath of a car crash. This was the second extreme episode he had experienced this year. Both of us are in the dark about his condition; all I could do was pray for his safety amid the turmoil. Like the last episode, this one struck unexpectedly while he was trying to fall asleep. It could stem from a range of issues — abnormal brain waves, psychosis, early-onset Alzheimer’s, or a Parkinson’s-like episode. The neurologist and I are continually attempting to find answers. At this point, he is prescribed medication for a variety of potential causes, merely addressing symptoms as they arise.

My beautiful son, Joey, was diagnosed with a rare condition previously known as Heller's Syndrome, now referred to as Childhood Disintegrative Disorder. He abruptly lost his ability to speak shortly before turning four. From the outset, his neurologist warned me that he couldn’t predict the course of Joey's condition or his chances of survival. As scientific understanding has progressed, I’ve gained insight into his situation. In 2017, a rare gene was identified that results in severe neurological complications, and I discovered that I had passed it on to him. I could elaborate extensively on how I believe this gene affected him, but to simplify, sodium regulation in his brain is disrupted, and the variant of my gene impairs his ability to process proteins.

Understanding Caregiver Grief

Recently, I attended a grief therapy course to renew my Marriage and Family Therapist license, and once again, I was struck by the limitations of my training. The course focused heavily on grief tied to death, which felt too simplistic for my experience. My profession tends to emphasize the inner turmoil of individuals, concentrating on dysfunction and the journey beyond it. As I read about prolonged grief disorder, I wondered what happens to those of us grappling with ongoing grief, like myself. If I had the time, I would develop a model for students illustrating how to navigate functional dysfunction. Life often presents us with challenges beyond our control, and there are concrete reasons why clients might find themselves entrenched in dysfunction.

When observing a hamster on a wheel, it seems to strive for progress, running tirelessly in place without ever reaching a destination. Caring for someone with a severe brain disability feels akin to this endless race — a perpetual ultramarathon without a finish line.

Each day, I have tangible reminders that my son is still here. Interestingly, I don’t meet the criteria for a prolonged grief disorder according to the DSM. I haven’t lost my bond with him, nor have I completely lost the essence of who he was. There exists no specific diagnosis for a parent managing the complexities of a child with a severe disability.

Relating to My Clients’ Struggles

I won’t delve into the various mental health diagnoses that may arise from caring for someone with a long-term disability. Instead, I wish to highlight the complicated emotional responses experienced by caregivers. In my therapy practice, I’ve encountered individuals grappling with profound struggles, and over the last decade, I’ve held them close to my heart.

I never imagined I would empathize with those battling borderline personality disorder, yearning for their internal agony to match their external appearance. I sometimes reflect on whether my son’s actions during his episodes warranted my seeking safety. Any physical impact he made felt overwhelming, yet I questioned if leaving him alone was the right choice. A part of me craved punishment for feelings I can hardly articulate. I longed to absorb all the pain — his and my own.

I think about a woman who ended up with forty neglected dogs, claiming to love each one while simultaneously evading the law. Her desperate attempts to care for the dogs resonate with my own feeling of helplessness in aiding my son. Unlike her, I lack the resources to care for my son’s needs. I even find parallels with pregnant teenagers who deny their pregnancies, mirroring my own disconnection from my body — I’ve neglected so much of myself.

The Reluctance to Seek Help

Just the day before my son’s latest episode, a friend inquired if I had considered antidepressants. It struck me as odd, despite my profession as a therapist. I should be well-versed in the effects of prolonged grief and complex trauma on brain chemistry, yet the thought of taking medication to alleviate my sorrow feels daunting. The stakes feel too high; it’s not just my safety at risk but my children’s as well. Part of me resists the idea of feeling better. I want to immerse myself in this pain. I know that one day, I’ll need to step back from my caregiving role, and I hope I can recognize when I’m nearing the bottom.

My friend observed my sadness since my son ceased accompanying me on hikes by the river. I wanted to scream, “Yes, I’m utterly devastated!” Shouldn’t I be allowed to experience the depths of my sorrow as I face losing him? Ironically, perhaps not. I’m expected to numb myself to these dark valleys. When do I acknowledge that I’ve spent over fifteen years navigating grief? I realize it hinders my ability to engage in conversations and maintain relationships, but shouldn’t it? Society often fails to integrate those with disabilities into their lives. Should I not feel their advantages and resent them for their privileges?

A Call for Recognition

When I express the desire for my son to hurt me more, I’m speaking about the need to acknowledge his disability fully. His condition has obliterated his ability to engage with the world. I feel responsible — I nurtured him, brought him into this world, and inadvertently bestowed upon him a painful existence. Not just for him, but for my daughter as well. We are all grappling with Complex Post-Traumatic Stress Disorder and Prolonged Grief Disorder, yet we don’t fit neatly into any diagnostic criteria.

The experience of caring for a loved one while witnessing their decline transcends conventional mental health diagnoses. One day, I intend to advocate for the American Psychiatric Association to recognize a diagnosis for families enduring what my son, daughter, and I face.

It’s no surprise that I resist medication, nor can I persuade my daughter to seek therapy or consider medication for herself. We lack a valid mental health diagnosis. Theoretical models aim to explain issues and propose responses, yet we need a framework that addresses the unique challenges faced by families like mine. I’m determined to develop a comprehensive model to support families navigating these complex experiences.