We've been very public with my daughter Evanna's story, between her website, her FB Community Group, and other SocMed sites. Part of the reason is to keep people up to date. And part of it is to inform the public about her diagnoses and help bring awareness. Part is to inspire other parents and people in general.
But there's another reason that we don't bring to the forefront: a sort of protection policy against CPS.
As a medically-complex child, she is at-risk for CPS intrusion in general, and more so in the event of a medical emergency, or frankly, even routine medical exams. For example, spina bifida children like her, especially when they have little or no feeling in their legs, can have fractures and breaks that may not be immediately noticed. And if during some other procedure an x-ray is taken, it can look like abuse. Or even worse--and we know of a family on the other side of our state this has happened to--a general practitioner or regular pediatrician with no exposure or training in spina bifida can insist on certain treatments that are contrary to parents' wishes, or even the child's specialists who may be hundreds of miles away.
So we are very active in showing her life, her conditions, her treatments, everything, so that if we ever find ourselves in such a predicament, we have that much more ammunition against them--or if need be, outlets by which to rally public support against such actions by CPS (public pressure can and does work).
Where Evanna's story is being told
Facebook Community Page: http://fb.com/EvannasJoyHer website: http://evannasjoy.com
IG: mostly on mine, http://instagram.com/scotters2k1 though she has her own at http://instagram.com/evannasjoy
We'd love to have you join us on this journey!