Overwhelmed by a relentless sea of emotions, worries, and responsibilities—each day felt like a week—long, exhausting, and without an end in sight. With gratitude, we embraced extended family and friends who, from the very beginning, rallied around us in our time of need. Everybody wanted to be there for Matt, and for us. These grandparents, aunts, uncles, cousins, and friends were more than mere acquaintances. Across the years, a rich landscape of memories had been painted using a diverse pallet of experiences--and more had been anticipated. There had been no shortage of creative, high-energy fun and laughter—with the occasional smatterings of sadness. In early years, relatives lived scattered around New York state, but later spread out across the country—Georgia, Florida, and California. Intentionally we gathered to share holiday meals, vacations, weddings, and, yes, funerals. We were familiar with the death of our patriarchs and matriarchs, but the prospect of Matt’s future being blotted out was inconceivable. Some people spent the night with us, and others simply joined us around the dinner table. Individuals consoled us, held our hands, gave frequent hugs and expressions of love—helped us weigh our options, and provided their insights—but in no way told us what we needed to do. All offered words of support and prayers. Unable to undo or change anything, this community assembled for moral support and busied themselves helping us in palpable ways—simple, meaningful expressions of love.

Ironically, there was a downside to being surrounded by and enjoying the company of so many caring people. Often, we, especially me, felt guilty knowing that while we were all together, Matt was alone and unable to escape his nightmare. The disparity between our grieving hearts and the moments we laughed together over a meal or a late-night movie; the warm, sunny, spring weather outside and the somber fight for life within; and the fact that Matt was healthy one day—the next day not; were hard to reconcile. Truthfully, though, we needed these brief moments of reprieve to ease our heavy burden. Even so, it was not uncommon, as the quiet of darkness settled, one or more of us would remember how fragile and tenuous Matt’s existence was—and be drawn back to his bedside, to pray for healing, to touch and feel the warmth of his life, and to express our love—over and over again so that there would be no doubt.