First thing every morning, a schedule of therapies was placed in the room for the nursing staff and families to review. The nursing staff ensured the patient was up, dressed in street clothes, and sitting in a wheelchair ahead of time. Sometimes, Matt was left in bed if the OT plan was to work on self-care and bed mobility. Equally important, families could arrange their visits to coincide with therapy sessions. Five days a week, Matt would receive three hours of therapy, one each for PT, OT, and speech—split between mornings and afternoons. The sequence of appointments varied daily, and services could be provided in his room or the therapy gym. The one constant factor was the treating therapists would remain the same. Mike and I knew these stable relationships would develop personal connections that would be valuable in helping to draw Matt out of hiding.  Additionally, the continuity enabled staff to monitor Matt’s progress and the effectiveness of their treatment interventions.  

Nurses were in and out to bathe, dress, get him in and out of bed, feed him, and give him medicine through a tube. The staff took a personal interest in Matt as a “real” person, not just a listless patient needing care. One male LPN (licensed practical nurse) talked nonstop, encouraged Matt, donated sunglasses to wear outdoors, and offered to help us in any way possible. Some staff teased him. Matt developed a cheering squad of therapists, nurses, and aides, hoping to be the first to hear him talk.

Compared to the number of visitors in the Intensive Care Unit, the volume dropped considerably at Sunnyview. Mike and/or I visited him daily, but our children lived too far away to do so. His Aunt Debbie and my pastor visited regularly, and when able, relatives and an occasional friend of the family or church members came. It seemed that when death knocked at the door, people could reign in fear and bravely stop by to see Matt.  But now, for all but a few devoted individuals, it was simply too hard to face the empty shell that represented the Matt they once knew or to confront the reality that he might not ever be the same. And how would they fill the uncomfortable silence if they were to come? Families aren’t immune to this stifling void and vacuum either, day after day. Many struggle to cope. Some withdraw within themselves—mute—trepidation and doubt wedged between their vocal cords. Others might cry inconsolably or visit less frequently. We, however, were intent on choosing a different path.

Naively, when I had worked in rehab, I was sure that three hours of therapy—more than double what the average hospital patient receives—was rigorous enough. Now, three hours on weekdays, one and a half hours on Saturday or Sunday, and a full day of rest the other day seemed inadequate to occupy Matt’s time. Since he currently could not participate in recreational therapy or evening events, it left ten or more hours a day with minimal stimulation to engage his mind and body, and—unable to advocate for himself, Matt had no other option than to sit hour after hour in his room—alone. It may have been standard practice, but as a mother, it tugged at my sensibilities, and I couldn’t help but want more for my accomplished son. How else were we going to reclaim what was lost?