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 →
In our long journey, I have experimented with many things in the effort to heal my child. I tried things I never thought I would have considered, and for the most part, they worked out great. Many of those things are still in my cabinet to be used to this day. *Before going further, please... Continue Reading →
I was recently reminded that while dealing with this disorder, you are never 'cured'. You are in remission, healthy now, or stable. This was exemplified by a recent minor flare after a 3-year streak. Support looks differently from family to family, depending on their triggers, severity, resources and more. For us, immediate support looked like... Continue Reading →
