Eve turned 14, had a growth spurt, began to feel tired often, talk to us less, and took longer to do her chores. Pretty age-appropriate behavior—or so we thought. On a routine visit with a physical therapist, he noticed Eve didn’t respond properly to basic reflex tests. He said, “you might want to see a neurologist.” From there, her symptoms worsened daily. Within just a few weeks, she could answer in only one word sentences, and spoke in a slurred and monotone voice. We noticed the right-hand side of her body responded at a slower speed. It took her two full minutes to write her own name, and hours to eat a meal. The light, once so vibrant and bright in Eve dimmed, until it seemed to go out entirely when she was hospitalized after a major seizure. What made the situation worse was the doctors couldn’t explain any of it. They could not offer us even the beginning of a diagnosis.
What came into view was that there were two paths open to us. One made this challenging situation heavier, the other made the challenging situation lighter. Maybe this choice seems obvious, but it wasn’t. As parents, our instinct was to attack the problem full force from all directions, reaching out to every neurologist in the country with a million questions, pulling all-nighters poring over medical journals and Googling for a cure or even a diagnosis, even researching alternative medicine. What the gravity of the situation called for, we assumed, was near superhuman effort, but such an approach would have been unsustainable and produce disappointing results. We took the second path.
We realized that the best way to help our daughter, and our whole family, was not by exerting more effort. In fact, it was quite the opposite. We needed to find ways to make every day a little easier because we needed to sustain this effort for an unknown length of time. If your job is to keep the fires burning for an indefinite period, you can’t throw all the fuel on the flames at the beginning. So, we decided there were things we couldn’t do. We wouldn’t torture ourselves with unanswerable questions. We wouldn’t worry ourselves sick. We wouldn’t complain that the doctors didn’t have the answers. We wouldn’t live in denial. We wouldn’t try to force the timetable. We wouldn’t ask “why us” and we wouldn’t try to do it alone.
We decided to focus on the simple, easy things we could control.
I am currently helping friends with their severely disabled child. The child needs round-the-clock supervision; this is especially challenging...