November 8, 2013
One of the things that stands out from Maddy's earliest days with chronic fatigue is that we made a leap backwards in time. Agewise, our family was well beyond the baby/toddler/nap stage. Since she was sleeping for hours every afternoon, all of a sudden I was shushing the other kids when they got home from school when they were just being normal, noisy teenagers. That made me feel sad, and also annoyed. Why couldn't they remember that Maddy was asleep? It just wasn't on their radar, despite living in the same house with her. And it didn't seem fair to have them constantly muzzled when they were just being normal kids.
Another adjustment that was challenging was family vacations. As a family, we usually went the camping route because it was more affordable, and because our family enjoys the camping/hiking experience. We had a joke that it wasn't a vacation unless we got lost at least once while hiking. It was something the kids had grown up with and looked forward to. Now we were faced with Maddy's physical limitations. It came down to careful planning, and doing the divide and conquer technique that all parents of more than one child employs at some point. Sometimes she just wasn't able to participate, so one parent would stay at camp with her. Sometimes she was able, but not at the same pace or duration as the other family members. Then one parent would hike with her, keeping in mind that we had to turn back BEFORE she was tired out. We really had to rely on her to gauge her energy level, and we had to believe her when she said she'd had enough. As parents, it was an ongoing learning curve to deal with Maddy, and be continually reminded that we often didn't know what was best for her, and had to consistently seek feedback from her.
One year we were revisiting a camping spot that had a trail to some waterfalls. Maddy had hiked it before getting ill, and was really motivated to see them again. The trail was over two miles, sandy, and gently up and down. I wasn't sure that she could do that long of a hike. She hunkered down and saved her energy for a couple of days, and was able to do the hike, going at her own pace and resting when she needed to. It trashed her for the next two days, but she was pleased that she could achieve that goal. That was another thing that we had to let go of: deciding what to expend energy on. So much of her energy was invested in just getting through the days, and therefore her life was pretty boring most of the time. The opportunity to do something fun and different was often worth it to her, even if it took a lot of energy.