At some point in your journey to diagnosis for a chronic, rarely diagnosed, or "zebra" illness/disorder/syndrome, you start The Notebook. The Notebook will contain important information about your child's (or your) health, medications, supplements, and more. Ours was a random pink binder that I had shoved under a desk. About five years in and several... Continue Reading →
Sometimes, with many illnesses, the safety of the family is in question. That's where hard choices need to be made. Respite Care can provide short-term relief to caregivers and often offers trained providers for those with complex needs. It is available in many different forms and for different situations: for aging adults, adoptive or foster... Continue Reading →
TW: this will not be a positive post..and that’s okay sometimes. As I go back over my manuscript to add more important detail and information, I find myself going back to those times: Relentless weeks of a child screaming at me that this is My Fault. The waking during the night in a panic, soaked... Continue Reading →
We just returned from a week-long vacation, traveling in our RV to Texas to witness the eclipse in totality. We used to be unable to ride in a vehicle together, much less spend days together in a small space. I realized a few hours into the trip that I had taken something as simple as... Continue Reading →
Daily writing promptWhat’s something most people don’t understand?View all responses There's a lot that people don't understand about PANDAS and PANS in general, but there are complexities around parenting these kids (and others with similar and overlapping qualities/disorders/illnesses) that others just don't quite understand. There is an inability to be carefree, to let your hair... Continue Reading →
