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 →
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 →
It’s almost that time…There’s nothing better than showing up to Christmas dinner only to find that your cousin’s daughter has the flu. Family gatherings are sometimes the best parts of the year - and often, it’s the only time you see certain family members. Thats why setting boundaries can be difficult. When you or your... 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 →
I met another PANDAS mom last week. I was wearing an old awareness shirt that had my son's name listed on the back along with hundreds of other kids suffering. She asked about it and when I confirmed I was parenting a P/P child, I saw her physically untense a little. She knew I could... 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 →
