In 2018, Mike and I had our sights set on retirement, the golden years, and travel. We were ready to slow down, not ramp up. Much like grandparents who choose to put aside their retirement and raise grandchildren, our plans and priorities took a U-turn—the duration, destination, and outcome unknown and possibly permanent.

The strain of our son’s battle with death and his struggle to live made this no small task. The oppressive, daunting weight of the early decisions we faced on Matt’s behalf taxed our marriage like nothing else we had ever encountered before. Each other’s annoying habits, idiosyncrasies, and pet peeves, previously integrated and accepted (mostly) over the years, resurfaced, adding to our dismay, stress levels, and trepidations. Our emotions ran rampant. It was the big unknown, and we were overwhelmed. It was an undeniable challenge to come together, to present a united front, and to support and uphold one another, regardless of the circumstances.

In the ICU, we had agreed Matt deserved a chance to live independently and work again. But Mike is haunted by the fear that Matt will become a shadow of his former self, with no quality of life. For me, the greater terror has been the thought of denying him the battlefield, the opportunity to fight for his own life.  Once we'd faced the Goliath in the room, a battle against the seemingly insurmountable odds of his prognosis, I felt compelled to charge forward. Yet—beneath my outward show of strength—the specter of devastating setbacks and stalled progress relentlessly torments my sleep. Even as I pushed ahead, Mike was preoccupied with the potential negative repercussions, second-guessing our decision, and wondering about the “what ifs.”  

As the weeks passed, I embraced each gain and shared it with others. Mike, not wanting me to get people’s hopes up or mine, would interrupt my comments mid-stream to interject that these slight changes didn’t necessarily mean anything. A sigh would escape before I determinedly bit my lip, wrestling a rebuttal into silence. I vowed to make future comments carefully, but ultimately, I didn’t want to dampen my enthusiasm. I wanted to celebrate every small and potentially significant change with a ray of hope and joy. Finally, I pulled Mike aside and asked him to stop casting doubt and creating an awkward, tense situation. I was fully aware that progress could stall at any moment. He should keep those thoughts to himself or discuss them with me privately. He was free to believe, feel, and wonder, but not to crush my spirit. As for me, I chose to believe in the impossible. It would take some time before Mike acknowledged and wanted to share with others that he had seen a slight improvement in Matt’s condition. His first glimmer of hope lifted my spirits, and like embers, flamed my resolve.

Looking back, it's clear that our individual personalities and established ways of dealing with things played a significant role. These deeply rooted tendencies influenced how each of us navigated the ever-present uncertainty and the overwhelming, heavy cloud that hovered over our heads. Mike appreciated quiet time and space to grieve, process the current situation, and reflect on the future. I felt a greater sense of purpose and ability to stanch the stream of fear if I kept busy. I chose to help with Matt’s care, both as a mother and as a therapist.  Mike wasn’t always comfortable with my actions, but I simply couldn’t sit idly by. No matter how exceptional the staff was, they had limited resources. I firmly believed that Matt would recover better if he were engaged, stimulated, and exercised more than the staff could provide.

Mike and I had been caught in a relentless triathlon for four months, balancing work, visits to Sunnyview, and fitting household chores into very little time. This overwhelming challenge intensified even further when Matt was finally discharged home to live with us in September. Our new reality—Mike and I, just the two of us—oversaw all aspects of his care. It was a long list that included dressing, bathing, diapering, and eating. Matt needed help with daily activities, getting in and out of bed, standing up from a chair, getting in and out of the car, walking, and many other tasks. And our own form of home physical therapy to complement his outpatient services.

Mike and I took turns staying home and going to work, cycling every two to three weeks for eight months. Every time we returned to work, we had to catch up on therapy sessions and changes at work. Mike, more than I, does best when life is predictable and includes rest, and there was none. The intense pace of the first year was exhausting. There was never a break. It was relentless and unsustainable.

We learned to accept assistance from others. Matt's aunts generously provided ongoing respite, allowing us to continue working and stretch our dwindling vacation time. Debbie, who lives nearby, frequently stayed with Matt on Friday mornings. My sister, Sue, traveled from Rochester, NY, to stay with us for four to five days every month. They assisted with meal preparation, helped Matt with his assigned tasks, created crafts, and played lots of games together. Occasionally, a friend from work or church would watch Matt so we could step away for a moment to have a date night or attend a meeting. The extra set of hands and energy enabled Mike and me to address other responsibilities around the house and work. Equally important, it gave us someone else with whom to discuss our day, concerns, frustrations, and success stories.

January had brought Mike's increasingly insistent suggestion: one of us needed to retire. That person should be me since Mike worked full-time, and I did not. Financially, it presented a logical solution, yet the thought of ending my 40-year career as a physical therapist felt premature. I still found joy in my work and believed I made a meaningful contribution. While we grappled with this difficult choice, we employed a home health aide one day a week over four months. The constant juggling of schedules and the sheer number of moving parts only amplified our stress. The stark reality loomed: our vacation time was finite, and once depleted, we would face the unacceptable prospect of leaving Matt in the hands of an aide for over thirty hours a week. It had quickly become clear that the impersonal nature of outside care didn't match our level of dedication. Ultimately, the weight of this truth forced our hand, and in March 2019, we put the wheels in motion for me to retire in May.

Despite my clear statement before retiring that I didn't want the full responsibility for Matt's care and rehabilitation, it didn’t transpire that way. It quickly became apparent that the added burden of caring for Matt, alongside his existing work and household duties, was unsustainable. Consequently, Mike naturally gravitated back to his established work schedule and home routines: the dishes, the laundry, the yard, and the bills. As a result, he participated less often in Matt’s recovery efforts. By evening, his energy was depleted, leaving him wanting only to relax in front of the news and television. That consistency helped him to keep it all together.

Life, as we know it, isn't always equitable, and marriage often demands an uneven distribution of effort. In any given situation, one partner might simply be better positioned—physically, mentally, emotionally, or in terms of skills, time, and sheer endurance—to shoulder the load. Sometimes, one person simply has to step up when the other cannot, for whatever reason. Mitch Albom, in Tuesdays with Morrie, aptly reinforces this truth. “I’ve learned this much about marriage. You get tested. You find out who you are, who the other person is, and how you accommodate or don’t.”

© 2025, Sarah Watkins