ABOUT OUR ANYFAMILY
Thank you for visiting this site and exploring the book, Shadow Syndromes. I wrote it for one reason only: to share our story and to help other families. I tell our story anonymously because we have already given enough to this illness; our privacy as a family is something we are unwilling to add to the losses. We have nothing to hide. Plenty of people know our story, but sharing our experience personally with those we choose to is very different than publishing it in a book.
And who we are . . . makes no difference at all.
We really are an Anyfamily . . . a normal family with hopes, dreams and struggles, just like everyone else. We had a stable and happy life, good jobs and health insurance—not to mention many years of successful parenting behind us—when a thief called PANS silently broke into our home and walked out the door with the child we knew.
It is astonishing how quickly parental confidence can fade, and how swiftly and astutely the outside world steps up with hasty answers, trite advice, and unfair judgment when parents do not proceed in the way ‘they’ believe we should (‘they’ being doctors, family, friends, neighbors—you fill in the blanks). When the gavel falls, many Anyfamilies become quiet, just like we did. They move into the shadows, silently, ceaselessly searching for answers, because navigating forward under the scrutiny of those who do not walk in our shoes is simply too much to bear.
Being lost in the wilderness of a Shadow Syndrome like PANS is a lonely, frightening and isolated place to be. You can find your way out (we have and many other families have, as well) but the journey out is not an easy one. The trek out is often referred to in medical literature as a ‘sawtooth pattern’ of remitting, relenting, and recurring symptoms. This means there is no straight, easy path back to normal. With proper guidance, however, you can make it out of the wilderness, but you will likely find yourself back in the woods from time to time.
We left the wilderness behind when Anychild was accepted into the Stanford PANS program in 2015. Even so, we occasionally end up back in the woods when Anychild has a flare and symptoms return. These days, because of our PANS-specific medical team, when we find ourselves in the woods, we always have tools and a map to help us make our way out.
We are painfully aware that the majority of families facing a Shadow Syndrome like PANS do not have this luxury. This is why we have shared our story . . . May what we have experienced and the things we have learned help bring your Anyfamily back toward the light of day.