So much anxiety for parents in PWS-world comes from waiting for the other shoe to fall. We've all heard that things would fall apart after our children turned this age or reached that grade. It's no wonder so many of us are on edge. That kind of preface to life with PWS would push anybody's anxiety buttons.
What we've seen with Erin reminds me of the difference between swimming in a river and swimming at the beach. I can't help it. I need a visual! 🙂
I learned to swim in the mighty Ohio River. The Ohio is wide and when you walk in, you never really know where that "drop off" will be. Some places, it's not that far from the shore and other places, you can go pretty far out before the bottom drops out from under you for good. That's quite similar to the way PWS is predicted to be by the "experts."
Compare that to swimming at the beach. Thinking back to this summer in California, the girls and I enjoyed the Pacific beaches and especially those few places near LA where the buffer of a bay, either natural or constructed, made swimming and playing easy. We would walk into the water and we knew pretty soon that although it was an uneven surface, we could go pretty far out and the water would not be all that deep. However, between the shore and "far out," there were dips and pockets that you couldn't really see until you were right up on them. You could be walking along, enjoying the water and the wind, then woops! All of the sudden, you're in over your head. You flounder around a bit and then find your footing again and stand up. A bit flustered and unsettled, you make a mental note to remain aware of those dips and you move on. This can happen over and over again, even when you know these upsets are there, but you can still go a long way out and remain standing.
That, to me, is more like our experience with PWS. I know that Erin is just 10 and so we have a long way to go and much to learn, but, so far, we haven't seen the dramatic "drop offs" that were predicted. We have stepped in the dips many times, but we have found our footing, regained our stride, and keep moving forward. The first dips were the hardest because we were unprepared and so scared. We thought we would surely drown, but as we figured out how to keep our feet beneath us and get back up, we learned that the dips could be survived and that there was still a lot of swimming to do and fun to be had.
The threatening nature of "the other shoe falling" drains us all of our precious energy and keeps us from enjoying our lives and our children like we should. I want to do everything I can to secure that stupid shoe to wherever it is that it's supposed to fall from and get on with my life with Erin. We've still got lots of swimming to do!