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 →
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 →
I started journaling when my trenches were just dips in the mud. It started as my son's food diary and notes of medications, doctor visits and symptoms so I could be prepared. I had no idea how important those things were until I needed them as our journey got more complex and heavier. As things... Continue Reading →
