Regardless of how our days played out, they were always a marathon from dawn until Matt was finally tucked into bed. From the moment our feet hit the ground each morning, demands rained down. The list of obligations vying for attention sought to elbow valuable time and energy away from Matt’s direct needs.

Matt and Mike met with an attorney in NYS to draft a Power of Attorney. After clarifying Matt's wishes, the attorney deemed him competent to approve changes and sign his own POA—a significant milestone as it was the first document he had been able to sign himself, and he did it quite well. With this in hand, I gained clearance from The Standard Long-Term Disability Insurance Company to manage his affairs. I immediately used this authority to complete the Federal and New York State tax deductions for his benefits, which first required a series of calculations to determine the correct monthly withdrawal amounts for each.

It was crucial to understand his available health insurance and financial resources, so I thoroughly reviewed all policies. I highlighted the most pertinent details and consulted with a company representative to confirm my understanding. This often involved navigating a complex system of voice prompts and multiple transfers before my questions were answered to my satisfaction. It felt like the phone was glued to my ear. There was so much to process, and a heavy responsibility to avoid losing this valuable assistance.

I was already well-versed in the health insurance benefits of Highmark Blue Cross and Blue Shield from Matt's hospitalizations at St. Luke’s ICU and Sunnyview Inpatient Hospital. Now I had to learn the nuances of his outpatient coverage. I continued to be impressed by, and grateful for, his policy. He paid one copay per day, regardless of the number of therapy services he received, and generally, services could continue as long as he was making progress. Soon, his Lafayette employee benefits, which had been fully covering his health insurance, would come to an end. We'd have to consider staying with Highmark or switching to another company. When that time arrived, we chose to stay with Highmark. While we could have found lower premiums elsewhere, no other policy offered comprehensive coverage that could compete with theirs. Medicare eligibility and disability benefits would become available after two years.

For months after Matt came home, I pored through a trove of hospital bills and insurance Explanations of Benefits (EOBs). I identified duplicate charges, fought for denied benefits (for instance, when the insurance initially denied a physician’s assistant's bill but approved it once the overseeing physician’s name was added), and held facilities accountable for using in-network providers, such as for blood work. This was a significant time drain, but I owed it to Matt to manage his finances as diligently as he would have.

The Standard Insurance readily acknowledged Matt's permanent disability and its impact on his ability to earn a living. The company would offset its financial obligation by helping us obtain Social Security Disability Insurance (SSDI), as the amount awarded would be subtracted from The Standard's payment obligation. Matt would still receive the same lump sum, but it would be split between the two agencies. In the long term, this was a better deal for Matt, since SSDI offers annual cost-of-living adjustments, while The Standard's payment remains a flat rate for his lifetime. The Standard even arranged and paid for a lawyer to help us understand, complete, and file the extensive forms. I meticulously pored over them late into the evening. According to Social Security guidelines, benefits would begin when Matt had been unable to work for a year or more.

On a simpler note, we arranged for a custom wheelchair fitting. While we played the waiting game for its arrival, we continued to use a basic wheelchair from a community medical equipment closet.

Then, far away on a distant shore, we maintained Matt's house. Mike had arranged for lawn service and asked a neighbor across the street to keep an eye on the house while a colleague from the college periodically checked inside. Uncertain about the future of his home and unable to contemplate selling it at the time, we decided to rent it. This decision forced us into high gear. The house hadn't been touched since early September, when fifteen caring people—students and faculty from Matt's church and Lafayette College's Electrical and Computer Engineering (ECE) Department—helped me pack up most of his belongings and kitchen items. I took this opportunity to select personal items, including clothing, to bring back for his use. Ensuing activities included identifying and working with a rental agency, creating a lease agreement, interviewing potential tenants, and signing the contract.

However, we were aware of a significant problem: the deck was in a state of disrepair.

Next on our agenda was packing, storing, or retrieving Matt's possessions. He was a pack rat, loving to buy things in bulk whenever he found a good deal—whether it was a six-pack of Yankee Candles, three-packs of Old Spice deodorant and shampoo, or a store's worth of batteries and light bulbs of all shapes and sizes. Our rental agreement allowed us to store items that weren't going with us in a large, remote section of his expansive basement. Loads of boxes were tightly packed in an alcove, above head level, while furniture, bicycles, beer-making supplies, and gardening paraphernalia were artistically arranged in the smallest space possible.

Exhausted, on the last night of our trip, I wrenched monster weeds with roots leading to China out of his raised vegetable garden. Working in the fading light and battling mosquitoes, I dragged five armloads and dumped everything in the hedgerow behind his rear fence. Scratched up and bleary-eyed, I dragged myself the final few steps into the house and into Matt's bed, where I had been sleeping. In the morning, I would have to say goodbye for the last time. I felt like crying.

It was time to cast off. We loaded boxes into the truck's bed, then drove to a rental company to obtain a flatbed trailer. We then carefully guided Matt’s much-loved pale green Toyota Prius, his pride and joy, and secured it in place. Following me, Dan towed the car to my house, where it would take up residence at the end of the driveway for an unspecified amount of time.

When at last, stillness settled over our house each night, and the weight of the day eased, my thoughts would shift from the arduous road that lay ahead to pause and acknowledge how far we'd come already. Knowing that the journey was far from over, I prayed that the unbreakable bond our family has forged in the fire of adversity so far would see us through. I prayed it would fuel our unwavering resolve to meet each challenge head-on.

© 2025, Sarah Watkins