I soon discovered that the grief following a Traumatic Brain Injury—or an Alzheimer’s diagnosis, or any transformational medical crisis—is fundamentally different from the grief that follows a death. While both involve profound distress, I found myself wrestling with the ambivalence of losing the 'old' Matt while the 'new' Matt sat right in front of me. This is what experts call an ambiguous loss, and in many ways, it felt more taxing and prolonged than any goodbye I had ever said at a grave.

This form of grief denied us the clear-cut closure of a funeral. There were no formal goodbyes; Matt was physically present, yet the person he had been for 34 years seemed to have vanished. To make matters worse, the immediate weight of our loss was compounded by anticipatory grief—a constant, mourning ache for the future we had planned that might now never be.

Our long, difficult journey through this deep uncertainty was like a ship sailing through thick, endless fog. We had lost the familiar port of our past forever, and we couldn’t imagine life without 'our' Matt. Our family foundation had been shaken by an incomprehensible and intangible loss, the unrelenting suction of a riptide pulling us under. To varying degrees, this feeling continued to cling to us even after he was medically out of danger, had begun to emerge, and was slowly regaining purposeful movement and communication skills. Yet, despite these triumphs, the absence of a clear picture of who he will become remains the most emotionally unsettling burden of all.

We would have liked a roadmap, a clear set of stages, or a checklist of strategies to navigate these uncharted waters, but there is no quick fix or universal solution. People facing grief should not feel pressured, by themselves or others, to move on. When their journey diverges from a predetermined idea of an acceptable process and timeframe, it can lead to a painful sense of failure. Your process is not wrong. It is simply yours, and it is valid.

My own path involved deliberate focus and action. Initially, I had chosen to carry my grief like a pocket watch—keeping it close to my heart, accessible, and acknowledged on my terms. This allowed me to function, but it wasn’t foolproof. When staggering grief escaped those intended constraints and dredged up raw emotions, I buckled like everyone else, so I determined to find supplementary ways to cope. While Matt was at Sunnyview days, I test-piloted a shift in perspective, balancing the persistent weight of sadness against “celebrating the small stuff.' By focusing on Matt’s hard-fought progress and envisioning a glorious comeback, I chose to look away from the 'Medusa' of our tragedy, so I wouldn't become a monument to what we had lost. In doing so, I reaffirmed that life with God is full of uncertainty and rich potential. I realized that if I welcome this new path rather than resist it, He promises to sprinkle my circumstances with grace. God will help me embrace and love Matt’s emerging personality, characteristics, and attributes.

From the moment we fought to save Matt’s life, Mike instinctively sensed the unique danger it posed; therefore, setting boundaries and protecting himself was essential. He understood that drawn-out, ambiguous loss would be the thread threatening to unravel his deepest vulnerability. A crippling fear that this event would have future consequences—not only for himself but also for those he cares for so deeply. Matt’s situation was, quite literally, his worst nightmare come true.

Because of this, Mike carefully guards his emotional well-being to stay connected and grounded. Doing so enables him to be present and involved as he is able. For this reason, he has decided that he is not ready to read this book; for him, it would be like ripping off a bandage and pouring salt on an open wound. Clearly, reliving the trauma and experiencing a staggering flood of emotions isn't worth the risk or the effort required to recover. Mike’s approach offers a vital, equally important way to survive the journey.

Our crisis had an instantaneous ripple effect beyond our home. My immediate co-workers and Peggy witnessed the agonizing beginning when I received the news, submerged in grief and facing the grim prognosis. Peggy later shared the incredible anxiety she felt, reeling from the news and questioning whether it was safe for me to race to Matt’s side and what she could possibly do. Her response was immediate; she galvanized the hospital staff to send cards filled with prayers. Receiving those messages during that awful week—when doctors disagreed, and we were considering saying goodbye—was a tangible ballast and reminder of the power of community.

Just like a firefighter must contain a blaze, we knew we could not give in; too much was at stake. The process and duration of grieving this ambiguous loss are unique to each of us—not just Mike and me as parents, but Ryan and Megan, and the entire web of family and friends expanding outward around and including Matt. Our only way forward is to let go of—or learn to control—the fierce desire for what used to be.

Currently, Matt lacks the faculties to fully grasp the scope of his loss, particularly its long-term implications. In many ways, that is a mercy. For now, he is content to be alive and to apply himself to better days ahead. We should follow his lead and shift our focus from the person Matt was to the person he is now, and embrace the remarkable man our son is becoming.

© 2026, Sarah Watkins